Thank you for visiting the Let's Breathe - Sarcoidosis web site.
Your comments and questions are appreciated.
Peace, Love and Healing
Brenda Harris
09/21/00 02:32:42
| Name: Marcia Beckman |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have had sarcoid for the past 18 years. There were also 3 other people who worked with me who also had sarcoid. I am tired of it! I was on steroids for almost 12 years and now go off and on them . After many talks with my doctor and having a very bad attack he finally told me I could try trentol but he didn't think it would help and took no interest in my use of it. I felt better than I had in years. I think his main objection was that a cousin of mine, who is an MD and PHD , suggested that I try it. Have you had any trials with trental.
09/19/00 06:05:49
| Name: Bobbie |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Looked in at your chat room,really went fast. I'mnew to computers but old with Sarcoid. Have had it for 28 years. This is the first time I have heard responses from others. I'll check in again. I'm not sure how to join in.
My doctor wants to start me on ' Remicade, she needs any info. from others who might have had it prescribed. She is fighting Medicare to cover this for Sarcoid, approved only for Rheumatoid Arthritis now. Anyone who has info. on this reply could be
helpful to us all.
Thank for being there
Bobbie
09/19/00 02:45:26
| Name: Sherry Rueter |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thanks for sharing your experiences of Sarcoidosis with all of us. It really does help to be able to read about other people with the disease. I was diagnosed in July, 2000 with Stage III Sarcoidosis in my lungs. My journey has just begun.
08/29/00 19:36:00
| Name: Lynn Fleet |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you !
08/09/00 02:42:22
| Name: Bonnie Scholz |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Great website. Thanks. I've just been diagnosed with sarcoidosis on August 4, 2000.
Bonnie
08/06/00 06:54:41
| Name: yvette h. |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
diag. with sarcoidosis, don't know if meds are
helping yet!!!
07/25/00 19:16:40
| Name: Brenda FORD |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Recently diagnosed. Are there any Drs. who specialize in tx. of sarcoid pts? Any information would be greatly appreciated.I'll be praying for you!
Brenda
07/20/00 00:40:19
| Name: LaReace Bolden |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I am interested in a support groug in my area. I am close to Memphis.
07/18/00 02:24:10
| Name: Pamela Clausen Hines |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosis with sarcoidosis in December 1998 For a while I was just on one daily inhaler as well as two other pills. My doctor thought that it was in remission and took me off of everything, but thirty days later I was having pain in my chest and di
ficulty breathing. X-ray revealed three new nodes in my right lung. Now he plans to put me on steroids on August 30th. I am so afraid. I am a Christian minister and I know better, but at times I feel so alone. My husband and family don't seem to unde
stand it was good to find your website and to read what others have to say. I have heard some bad stories about this disease as well as a bout steroids and I don't want to take them. thanks for allowing me this time to talk with someone who understands.
Thanks for your web site.
07/14/00 01:58:05
| Name: CHARLOTTE THOMAS |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
THANKS FOR SHARING
07/14/00 01:56:22
| Name: CHARLOTTE THOMAS |
| My URL: Visit Me |
Comments:
07/08/00 22:39:20
| Name: Traci McKinley |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Have you ever heard of anyone having Sarcoid that had Necrotizing Granulomas? An answer would be greatly appreciated.
07/02/00 20:27:03
| Name: Ophelia Scott-Grant RN |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I recently admitted a patient with sarcoidosis for outpatient rehabilitation. I have been a nurse for 13 years and have had no experience with this particular disease. I would appreciate any information from you as the patient that I could pass along to m
patient.. Thank you and God Bless......
06/24/00 16:30:18
| Name: pierre walton |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
we're just looking to talk with someone who understands the disease and can maybe give us some insight. i was diagnosed six months ago.
06/18/00 05:48:30
| Name: Debra Clay |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My mom is suffering from this disease and the doctors told us there was nothing more they could do for her. I wish so badly that I could help her.
06/17/00 15:28:45
| Name: Linda Lanier |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda,
First time I visited your site. Very impressive. Keep up the good work. I will be on line soon so, I definitely want to be included in the webring.
Linda Lanier
06/13/00 13:18:03
| Name: Angela Murrell |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda, thank you for responding to my email.
I am having trouble locating the support group
listed for this area. the phone # has been
disconnected, the location was listed as Huber
Heights OH. Is this the closest location you know
for Cincinnati, OH?
06/09/00 17:44:45
| Name: Karen leach |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I'm glad that I can turn on my computer and share this Sarc with others who also feel the same distress. After 20 years and constant problems,,it has taken its toll on me and my family. Love to you who has given me this special site of Peace
06/08/00 20:30:06
| My URL: Visit Me |
Comments:
06/07/00 20:46:01
| Name: Maryann Murney |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
This page tells me wehat I want to know! THANX!!!!
06/06/00 03:53:49
| Name: Shelly Carpenter |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was recently diagnosed with sarcoidosis and didn't know a thing about it. Your website has helped me to understand about this disease. But I am still having a lot of questions in my head. Keep up the good work!
Thanks again,
Shelly
05/29/00 01:23:33
| Name: ANITA |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
VERY ENLIGHTENING!!!!!
THANX FOR THE INFO!
05/22/00 13:49:44
| Name: Judy Howard |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
05/19/00 23:32:03
| Name: Mary Jane Gautesen |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I,m 65 years old and have had sarcoid for many years. This time it has effected my heart but I'm doing quite well with a pacemaker. I feel that the internet has empowered me by giving me the knowledge that I haven't been able to get from the medical prof
ssion. The more I know the better I feel. Thank you. Mary Jane
05/19/00 21:05:19
| Name: ELSWORTH L. LeGRANT, SR. |
| My URL: Visit Me |
Comments:
I WAS DIAGNOSISED WITH SARCOIDOSIS IN JUNE 1996. I AM TAKING PREDNOSONE AS A MEDICATION. PRAYING DAILY THAT THE DISEASE IS NOT FATAL.
05/14/00 02:08:42
| Name: David Crouch |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda this is DAVID CROUCH I LIKE THIS WEBSITTE ALOT AND I HAVE LEARND ALOT FROM IT . THANKS FOR YOUR HELP.
05/11/00 18:57:05
| Name: LORETTA A.LVERSON |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I NEED SOMEONE TO RELATE WITH TO TALK WITH TO UNDERSTAND BECAUSE I AM AT A POINT OF LOSING MY MIND
05/11/00 11:33:36
| Name: BrianK.Ballard |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
05/03/00 19:20:04
| My URL: Visit Me |
Comments:
04/24/00 20:08:53
| Name: Deidra Harrison |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My husband was diagnosed in 1997 with Sarcoid. When he is on steroids they make him feel he suffers from side effects. The worst part he says is the terrible cramps he gets. Do you know of any alternative treatment to this disease other than steroids?
I read alot of emails from your site and find them helpful.
04/19/00 20:25:50
| Name: Beth Losee |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
04/19/00 04:02:06
| Name: Carl Willis |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hello Brenda, I'm a 33 year old male who last summer was training to run my first marathon. I was running 32km in my training runs before before disaster struck. From being so active I suddenly found myself struggling to do the most basic of things. The D
ctor put me on prednisone which really helped to control the disease in the short term, but long term or until life becomes more tolerable what exercise would you recommend.
04/19/00 03:53:03
| Name: Carl Willis |
| My URL: Visit Me |
Comments:
04/19/00 03:35:06
| Name: ruthi johnson-smith |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
04/11/00 06:04:15
| Name: Judy Saunders |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda, I love your site!!! I just surfed on. I hope you are ok. Thanks for this place where we can all gather, chat and lend moral support for each other... Thanks again, Judy Saunders
04/10/00 19:58:41
| Name: Margaret Ann Bezer |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have had sarcoidosis for many years now and at present i am on prednisolone 20 per day, I find it infuriating just how much weight you gain but most of all its the moon face we get.
regards Margaret Ann
04/07/00 10:02:26
| Name: diana clossin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
04/02/00 17:27:48
| Name: Francine Duda |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for all of the information. I'll be at the Sunday Chat 4-2-00. I was diagnosed with Sarcoidosis in Feb,1994 after being chronically ill since October, 1993. I was treated for 6 weeks in Feb,1994 with prednisone and provental inhaler, and asma
ort inhaler. July 1,1994 I had atrial fib attack. Then my sarcoid went into remission. In Sept,1998, the sarcoid reared its ulgy head again. Since then I have spent 1 year on prednisone and inhalers to no avail. The pred triggered diabetes in me. The
arcoid has progressed from being in just the lymph nodes in the meial sternium to the hilar region of the lungs and is affecting my muscular/skeletal systems. Because of the muscle and bone involvement I am now on methothrexate and prednisone. The predni
one has caused some bone density loss so they are treating me for that also. At 49 years old I feel like I'm 100 years old with all of these drugs and tests I have to do daily. But when the depression hits I remind myself that at least I'm alive to feel
like I'm any age at all. I guess all of the physical pain just confirms that I'm alive and the drugs and tests keep me working daily. My kids and mother do their best to help and understand, but my husband just doesn't get it. He thinks this is all just
a bunch of garbage and I must surely be well by now. So your chat groups and information on Sarcoid are the only sanity and understanding I have. Even my doctors don't seem to understand that when I'm feeling a certain way I can generally tell what is t
e matter. My general doctor wanted to put me on prozac when I had such terrible muscle spasms and pain in my entire body especially me legs that I was finding it hard to do my daily routine. He felt that I was depressed and that what was causing the pai
and spasms. Luckily my pulmonary doctor convienced the gp to send my to an arthritis specialist who after many tests discovered that the sarcoid was the culprit. Enough of my rambiling on. Thanks for listening and for being there.
Love
Fran
04/02/00 00:33:49
| Name: Jami Hudson |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
First time visitor, Your site is fully of useful information. Thanks for helping.
03/31/00 08:09:15
| Name: Vickie L Johns |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have Saccoidosis and I'm looking for others that have it.And a support group.
03/17/00 22:24:44
| Name: Robert Ernest |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
DearBrenda:
It seem like you are a world of knowledge for all of us. Thanks for giving your time and effort.
Robert Ernest
03/17/00 19:37:32
| Name: Dean Reid |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Great site. I was diagnosed with Sarcoidosis in 1996. I have been on several doses of prednisone. This steroid does nasty things to your body. I suffer a introgenic knee injury while on prednisone (patellar tendon rupture). True, this drug will put w
it on you so continue to stay active and watch what you eat. I'm off prednisone now but I'm having symptoms again. I'm in the military and currently going through medical evaluation board because Sarcoidosis. Each time I have a flair up it something diff
rent; first I had weight loss, then joint pain, eye pain, and fatique. Being in the military I'm required to meet certain physical standards such as run two miles (ha). If anyone is prior military and received medical retirement due to Sarcoidosis pleas
email me.
03/16/00 02:56:02
| Name: linda parks |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I WAS TOLD IN 1988 THAT I HAD SARCOID AND HAVE SINCE APRIL FOUND OUT IT IS OUT OF REMISSION. I WAS TOLD THAT I HAD NOTHEN TO WORRY ABOUT THAT IT WOULD JUST GO AWAY ON ITS OWN. WELL IT DIDN`T. I`M HOLDING MY OWN I GUESS YOU COULD CALL IT BUT I`M SO TIRED O
GOING THREW THIS DAY AFTER DAY. THANKS FOR LISTENING, LINDA
03/15/00 14:31:34
| Name: Tamara Williams |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
03/11/00 00:52:21
| Name: JOHN E. AHEARN |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
IVE BEEN TOLD AT A VA HOSPITAL IN ALBANY, A FEW YEARS AGO THAT I HAVE SARCOIDOSIS,,BUT THAT THERE WAS OR IS THERE ANY TREATMENT,,,THAT THERE IS NOTHING TO WORRY ABOUT...MY DAUGHTER FOUND YOUR SITE A FEW MONTHS AGO, AND NOW I KNOW HOW SERIOS THIS THING IS.
.BUT I DON'T KNOW WHERE TO START OR WHAT TO DO... I AM 67 YEARS OLD,,AND DON'T KNOW IF ANY EFFORT WOULD ONLY BE A WASTE OF TIME...
03/11/00 00:40:52
| Name: Joe Weise |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
03/09/00 23:01:12
| Name: Edward |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hello ,I have had this since Dec 1993,My doctor never even told me much about it.I had to read about it in books and stuff on the internet.I am very glad to see a site like this.I hope we have a cure for this sometime.Sincerly Ed
03/03/00 16:45:01
| Name: Martha Heckel |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Goo dluck with your altruistic vision of educating! You certainly taught me something. Thank you.
03/03/00 16:44:32
| Name: Martha Heckel |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Goo dluck with your altruistic vision of educating! You certainly taught me something. Thank you.
03/01/00 23:24:54
| Name: debbie phillips |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have sarcoidosis. This is new to being online and reading about sarcoidosis. Please keep my e-mail address and keep in touch.
03/01/00 05:22:36
| Name: Lone Pedersen |
| My URL: Visit Me |
Comments:
02/29/00 01:49:54
| Name: sharon |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda - I love your web page. I too have sarc and had the same nagging cough for a year. I had several biopsies and have sarc in both lungs and my bronchi. I am now off meds and feel pretty good. I have become a much stronger person since being diagn
sed with sarc. It has given me an inner strenght and a strong belief in God. I feel very lucky that my sarc is not as bad as some of the others I read about. I tried the Sunday chat room but I get nervous because I can't keep up with the fast pace. I wi
l try again this Sunday and maybe I will be able to join in. I wish you and everyone else with this mystery disease a long and beautiful life. Sharon
02/27/00 14:12:29
| Name: Bernie Reddington |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I am prrsently awaiting confirmation of the presence of sarcoid in my lungs, I have had a dry eye for at least ten years, arthritis and pains in my mucles, recently I have had lumps on my legs and pain on breathing I also have asthma and am very aprehensi
e.
02/26/00 20:10:57
| Name: Cheryl |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I am involved in respiratory therapy and I did a paper on Sarcoidosis. I read that it could be related to AIDS. It deals with the immune system and has no origin. I pray that you all put your trust in Jesus. He is the only one that can give the hope and
trength needed in order to make it daily. I believe that a cure will be found one day!If anyone needs to talk please feel free to email me, I am a good listener.
02/24/00 19:48:02
| Name: Vicki Isaly |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosised with sarcoid/lungs April 1987 at 31 yrs old. Have been on prednisone for the last 8 yrs..Now on low dose and have been told I will be on it the rest of my life. I have which I feel is Chronic fatigue. My pulmonary spec disagrees that Sar
oid would cause this. Anyone else feeling unusually tired.
02/23/00 16:06:52
| Name: BethInVirginia |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed with sarcoidosis in July 1999 after over 6 months of mysterious symptoms my doctors were unable to decipher. The sarcoids are in my lungs (confirmed by biopsy) and my heart (concluded from gated MRI and arrhythmia). My main symptoms arep
ofound fatigue and aches and pains that travel around my body. My first symptom was an irregular heart beat which is being controlled now with medication. I've been taking steroids (methylprednisolone) for 7 months (yuck!). I welcome correspondence fr
m others suffering from sarcoidosis.
02/21/00 19:15:19
| Name: dipsy |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
02/18/00 23:37:26
| Name: Doreen Gabrielson |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
02/18/00 04:21:00
| Name: Michele Barnett |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi! New internet user. I've had sarcoid for about 10 yrs. and have been off and on medication throughout. The fact that it was the first keyword I looked up online shows how much of a priority it is for me. I mostly suffer from the skin problems and the
shortness of breath. Currently I am on prednisone (3 wks.), but it's not my first go round with it. Also plaquenil and inhalers. All in all, I'm still blessed but this condition really throws me for a loop. I look forward to learning more. Hope you're
oing well with it and thanks for taking time to be a conduit of information about this rare and very strange condition. MB
02/11/00 20:32:48
| Name: Erik |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda,
I like your site very much; glad I found it. I was diagnosised in nov. 1999. Greetings from Belgium (Europ).
02/08/00 21:59:31
| Name: sherry fleisch |
| My URL: Visit Me |
Comments:
We, meaning the doctors and myself are working on my dealing with this illness. I will have an e-mail address soon and will return to talk.
02/03/00 18:28:48
| Name: Susan Livingston |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosised in Feb. 98 but had symptoms for up to 6 months. I am a speech pathologsit and come in contact with many diseases . I am wondering how I acquired this but I am much better after 2 years on predinisone.
01/28/00 17:38:42
| Name: Dena |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda,
Your website on Sarcoidosis is excellent. I really appreciate all of the information you have provided. I have had Sarcoid in my lungs since 1995 with no improvement.
Debby, my sister, has created a webring in order to bring all sites with information on Sarcoidosis together. We would like to invite you to join this webring. To join, please go to
/ddplace/Sarcwebring.html
Take care and God Bless!
01/19/00 13:00:32
| Name: Brenda DixonFord |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I'm 51 years old and I've had Sarcoid for about 20 years. My doctors are starting to drop hints about a transplant because my lungs are so fibrotic. I don't know if I want to go that route but I am thinking about at least talking to a transplant team.
ince I'm in Philly, I'll probably make an appointment at Temple.
01/18/00 01:00:45
| Name: Rich Grimm |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
First time visitor...diagnosed with Sarcoid in Jan 2000...hoping for the best.
01/14/00 00:20:01
| Name: anita |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Just looking for someone that can understand me. I fear the flair ups and really do not have a person I can talk to.
01/11/00 00:19:26
| Name: Erin Sands |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
01/05/00 18:41:35
| Name: r. skelley |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda:
Do you have any information about the upcoming Sarcoid convention in New Jersey? I believe it is from 1/27/00 - 1/28/00. All I know is that it will be held in Somerset, NJ. Please e-mail me w/any info @ Regswindow@aol.com Thank you!
01/04/00 00:43:07
| Name: Paula Hendrickson |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My brother, a gulf war vet, has recently been diagnosed with sarcoidosis. He has lung capacity of 30% and in on oxygen 100% of the time. My family and I are trying to learn all we can to better help him. He tells me the VA doctors have put him on a lun
transplant list, but because he is diabetic the doctors didn't feel that a lung transplant was a viable option. Let me know if you are aware of anything that might help him. Thanks, Paula
12/23/99 19:44:01
| Name: andrew peoples |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
i found out about sarcoidosis in 1973 when i was
12/14/99 15:17:08
| Name: Sharon Pilon |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
This disease scares me very much. My legs look like war zones and my place of employment does not understand the pains in my joints.
12/14/99 01:37:24
| Name: karen davis |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for you insite on sarcoid i have been suffering symtom from aug. 1999 diagnosis dec. 1999.
again thank you
12/13/99 01:30:07
| Name: patricia |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was finally diagnosed with Sarcoidosis four years ago. I know I have had it for more than 35 years, with transient symptoms. How appropriate, "Let's Breathe!" I love it!! Pj
12/02/99 19:18:24
| Name: Donna |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank You for having this site. It took me awhile and some searching to find a sight with the information on this disease. My brother has it in his eyes and cannot see as well as he once did. Again, thanks for answering so many questions here.
11/30/99 03:52:22
| Name: PAT CAMPAGNA |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
WOULD LIKE TO SUBSCRIBE TO NEWSLETTER ON SARCOIDOSIS. WAS DIAGNOSISED WITH SARCOID IN 1997
AND HAVE NOT BEEN ABLE TO GET MUCH INFORMATION OR ANY NEW FINDINGS ON THE DISEASE.
11/20/99 20:15:50
| Name: SHEILA DENT |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
HI BRENDA, I RECEIVED AN E-MAIL FROM YOU TODAY. GLAD TO HEAR FROM YOU AND I WILL BE JOINING YOUR CHAT SESSIONS. I ALSO HAVE "SARCO" OF THE LUNGS. I HAVE HAD THIS DREADED DISEASE SINCE 1993. I RECENTLY HAD THE PLEASURE OF MEETING SOMEONE ELSE WITH SAR
O THAT GOT MY NAME FROM A GUEST REGISTER, WHO LIVED IN MY AREA. WE ARE IN THE PROCESS OF TRYING TO START A SUPPORT GROUP IN OUR AREA (SINCE THERE ARE NONE). THANKS FOR THE WEB SITE, KEEP UP THE GOOD WORK, AND GOD BLESS YOU! THANKS, SHEILA
11/19/99 18:33:54
| Name: susan |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
11/19/99 01:51:58
| Name: patty |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
need someone to talk to
11/13/99 21:57:21
| Name: Patricia Arrington |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have a godmother who has this disease and is now in the chronic phase. Any info is usefull. Please send to above adresses. We're desperate.
11/07/99 21:47:55
| Name: Sarcoidosis Nederland |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
A little visite to all the award winners.
You do a great job!
Greetings
Jan Veneman
the Netherlands
11/05/99 17:45:29
| Name: Paula |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My doctor just diagnosed me with Sarcoidosis. So far I have no symptoms - just high calcium and Vitamin D blood levels. Currently trying to learn about it especially if it will cause problems to have more children.
10/30/99 10:22:07
| Name: Margaret D'Anza |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have been suffering from a number of complaints, ie high calcium levels, even after a parathyroidectomy, vasculitis, glaocoma and other things, my specialist now suspects SARCOID, I am awaiting test results
10/30/99 00:49:29
| Name: Michele Armstrong |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hope you got my message and can get the info for me. Glad I found your site:)
10/28/99 17:00:21
| Name: Ruth M. Fernelius |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have struggled with sarcoidosis in my lungs for
about two and one half years since my diagnosis. I believe I had it some time before I was diagnosed. I am on oxygen and prednisone. I try to live a normal life - drive and work every day. The discouraging thing is lack of recovery from this disease.
y pulmonologist gives me no hope of any recovery. I keep thinking there must be something!
10/28/99 17:00:21
| Name: Ruth M. Fernelius |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have struggled with sarcoidosis in my lungs for
about two and one half years since my diagnosis. I believe I had it some time before I was diagnosed. I am on oxygen and prednisone. I try to live a normal life - drive and work every day. The discouraging thing is lack of recovery from this disease.
y pulmonologist gives me no hope of any recovery. I keep thinking there must be something!
10/24/99 19:58:13
| Name: Dennis Bettis |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I would like to E-mail others with this problem. Please feel free to Contact me at E-Mail ddbettis@cs.com
I have just found out that I have had this Sarcoidosis for four years. I write Worship Music and sing. I need my lungs and health. Feel free to listen to my CD free of charge at:
HTTP://ajdmusic.iuma.com
I will be praying for your healing. Pray for me.
Dennis Bettis
AJD Music
10/24/99 19:47:58
| Name: Dennis Bettis |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have been just been told that I have sarcoidosis.
I am a worship leader and singer. Thank you for letting me share this with you. My Chest is 25% full of this stuff.
God Bless,
Dennis Bettis
AJD Music
10/19/99 02:52:08
| Name: Earl |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Diagnosed about 9 months ago, lungs are a mess. Started first with pneumonia, lungs did not clear up, Drs. did nice job moving right along with tests including biopsy and ct scan which showed granuloma in lungs and lymph nodes. Used corticosteroid inhale
for 2 months without any effect. Now on prednizone which has cleared up the cough. Feel fine and continue to work out at the gym, ride bike etc. my Dr. encourages exercise. They continue to monitor eyes, lungs, etc. Curious type of disease. Only hear
f it when you got it. PS I am 56 years old so that thing about getting it between 20 and 40 may be a little off although I only feel in my 40's so can't complain that much. Best to all.
10/18/99 22:10:07
| Name: Jamie Parrish |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Glad to know I ma not the only one that feels despair at times.
10/18/99 19:33:05
| Name: Tonya Lancaster |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
10/15/99 06:44:09
| Name: Kerri Fraser |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My Aunties has been diagnosed with nodes on her lungs. They say it is Sarcoid disease and also say it is different to Sarcoidosis. Do you have any information on Sarcoid Disease?
Thankyou
Kerri Fraser
10/14/99 13:42:09
| Name: Loretta Stickley |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was just diagnosed with sarcoidosis this past week. I'm not sure of what it is, why it is, treatment, outcome, etc. This is why I am visiting your homepage.
10/11/99 14:34:14
| Name: Lisa Hatten |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda,=
I am responding to your website because I have a=
friend who was diagnosed with sarcoidosis in Feb.=
of this year. The doctor he is seeing has= failed to supply him sufficient information= regarding the disease in terms of causes, ability=
to return work or expected lifestyle changes. HELP!=
10/08/99 02:32:25
| Name: randy40 |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was found to have sarcoid in Sept.1998. It is a
very scary disease because the doctor doesn't tell
me anything about it except I've got it. I cough alot and have lots of trouble breathing. The last few days the pain in my side and legs have gotten worse.
10/02/99 17:03:14
| Name: Doris J. Peterson |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Very interesting website. Keep up the good
work.
09/30/99 19:47:04
| Name: A J Howe |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have had the diseaes since Jan this year.
Still don't really know much about it!
Gratefull for any enlightenment.
09/30/99 18:59:49
| Name: Janet Marie Rudy |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have lost use of one lung with this disease and
have become a case study. I'am very much afraid of what is going to happen to me if they do not get control of this disease. It seems to move around my body not just my lungs. my lynphnods,MY JOINTS AND now I'AM TESTING WITH HIGH AMOUNT'S OF PROTIEN IN
Y URINE. ANY INFORMATION OR HELP WOULD BE GREATLY APPRECIATED. THANK YOU.
09/26/99 22:34:20
| Name: Daryl |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I recently found out I have sarcoidosis, my only symptoms at present are fatigue and insomnia.
This is a great website. God Bless.
09/22/99 00:32:25
| Name: Gerry Cole |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I hope to learn more about this disease. I have it also, but did not know much.
09/15/99 00:46:28
| Name: Barbara Kluger |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Keep up the good work. Why did the doctor at the recent forum you attended think that Sarcoidosis should be diagnosed early for better results? There's no treatment, it either goes away by itself or, it's chronic. Right?
09/13/99 01:26:23
| Name: jean kopacz |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have been treated since December for Sarcoid- My breathing is a little better and hopefully I will see results in my next chest xray in Oct.
I never heard of this disease til I came down with it -- I wish you the best
09/10/99 06:31:37
| Name: Tom Gaynor |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
09/05/99 07:33:54
| Name: lucy |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
i'm interested in knowing more about the cough that's associated with sarcoid and what cures/timeframes for the cough are available.
thanks and God bless
09/02/99 04:49:52
| Name: laura |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
i get so tried all the time .that must happen alot.
08/27/99 17:20:55
| Name: Nilda Hernandez |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Great Page!
08/18/99 23:27:46
| Name: Fiedel Brown |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed with sarcoid for 1 year now and it is a releif to know that there is someone else to talk to .
Thanks again
Fiedel
08/18/99 23:26:48
| Name: Fiedel Brown |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
08/18/99 20:34:29
| Name: pat o loughlin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
keep up the good work,i had sarc.back in 1987
it left me after i left hos. i dont know if its
gone forever maybe a message on this page would
give me some idea i live in ireland . i had severe
bruising from my ankles to my hips blue finger nails severe breathing difficulty. i was never told it had gone because after 5 months well inever went back to hospital
08/16/99 13:26:33
| Name: Les Sayles RRT |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Awesome website, I am a respiratory therapist
in MS, hoping to interest other therapists in
supporting support groups. I work with two now,
better breathers, COPD patients and as of yesterday, the Sarcoidosis group. We need some
help getting off the ground, but much work has
been done by Jessica Slaughter here in Tupelo.
My aim right now is to get a booth for Sarcoidosis
awareness day as that day falls in the middle
of National Respiratory Care Week.
08/14/99 20:09:45
| Name: Joe |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
diagnosed with sarcoid in 95. Started prednisone 8/12/99, the Dr. also gave me an inhaler.I don't know a whole lot about this disease interested in talking to others about it.
08/13/99 13:52:39
| Name: SHERRISA |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed with sarcoid on August 10, 99, after I had a Fiberotic Bronosocpy and Biopsy on Aug. 4, 99. The lung specialists said I was in stage II. I started noticing the different symptons in Oct. 98. I had sharp chest pains in the right side of m
body and my right arm and hand would ache constantly...Then in May 99, both of my legs and ankles swoll up to the point I couldn't walk or wear my shoes, this lasted for 10 days. I've done research at the library about the diease but, It's nic to know t
ere are many more people in the world who I can communicate with about Sarcoidosis...Anyone please E-mail me at Reese1110.
08/13/99 13:23:06
| Name: SHERRISA |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
08/13/99 13:18:35
| Name: REESE1110 |
| My URL: Visit Me |
Comments:
08/04/99 16:26:23
| Name: Ken V |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I am a 33 year old male and was diagnosed with Sarcoidosis 2 days ago. I initially went to the doctor complaining of pain in my lower left ribs. From a chest x-ray the doctor noticed enlarged lymph nodes. After a biopsy, it was confirmed to be Sarcoido
is. The doctor stated my pains were unrelated and Sarcoidosis is nothing to be concerned about. "It clears itself up in 6 months to a year." Curious, I decided to check the Internet for information. It now appears that there may be more to this diseas
than I thought. I believe I have some symptoms (difficulty breathing) but they seem to be mild. I am interested in talking to others to see how they were diagnosed, what their symptoms were like, how the disease progressed, and how if affects them. Af
er finding web sights such as this, I now want to learn as much as possible about how this may affect me.
07/31/99 00:33:52
| Name: Lori Vigars |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
07/25/99 00:54:42
| Name: Kirsten Hydorn |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have just been diagnosed with sarcoidosis after the onset erythema nodosum in my knees and ankles. I have so many questions and so few answers. I am 33 with three small children. What is my future and how can I protect my family? I need all available in
ormation including any specialists who may be recommended. I am scared.
07/22/99 07:49:57
| Name: Bruce A. Helgeson |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda:
I was diagnoised with Sarcoid this last week after 2 years of having diffrent symptoms and nobody being able to give me any answers of what was wrong with me.I had to go to the ER during work last week becouse I could not breath and I hurt so bad all over
and had all the other poblems going on with this disease. I had a Docter look at me that specializes in cancer and he started running test and confirmed I have sacroidosis..
Now I am trying to find more info on this and talk with people who have the same problem..Thank you for taking the time to set up this page to help us out and keep us informed.
Bruce
07/14/99 04:56:48
| Name: RUTHANNEDMONDSON |
| My URL: Visit Me |
Comments:
I was diagnosed with sarcoidosis in May 1998 but was suspected to have had it as long ago as 1993. I had pnuemonia twice last year and had a bronchoscopy that it when the Dr said that I had it for sure. I have spent most of this last year on Prednisone,
drug which I have grown to hate, a necessary evil. I have tried chiropractic care and some herbs but have not been to successful in "getting rid" of this disease. I have just now started to try and find someone to talk to about it and was so excited to
find this webpage. I had at first just signed my name and then started to read the comments from the others who suffer from this disease also,I realize that I am not alone in this and my heart and prayers go out to everyone here that has this disease. My
family doesn't seem to understand and family and friends say that I don't look sick so I have tried to ignore it even though there are days that I feel bad and my chest has that dull ache all the time it seems so that sometimes I want to scream. It is ni
e to know that there is someone out there that can relate. I know that others including my family don't mean to seem unconcerned its just that so little seems to be known about this disease. Thank you so much for establishing this site and to everyone o
t that suffers from sarcodosis, May God bless and leep you in His loving care, is my prayer.
07/14/99 03:47:41
| Name: RUTHANNEDMONDSON |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
07/12/99 13:22:25
| Name: Rita Young |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
07/08/99 15:49:07
| Name: Michelle |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed with sarcoidosis in 1993 when I was 13 years old. I have been battling with it ever since. It affects my lungs greatly. I have been on Prednisone since I was diagnosed. The side effects are really getting to me. I despiretly need someo
e to talk to. I would greatly appreciate any mail that I get.
07/08/99 15:39:11
| Name: Michelle |
| My URL: Visit Me |
Comments:
06/23/99 03:14:06
| Name: Swede Carlson |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have sarcoidosis and diabetes. Steroids for some of the sarcoid-associated problems cause elevated blood sugar levels and make insulin control very difficult. Eyes have been affected and I often get uveoparodiditis.
06/16/99 21:02:08
| Name: Tana Needham |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Just checking your website for information about Sarcoidosis. I was diagnosis this it about 6 years ago. I hadn't had any real problems with it for a long time, until just resently I was under a lot of stress and I became very aware that I still have it a
d it hadn't went away. I was told by my doctor that sometimes it just goes away and never gives you anymore problems, but evidently he was wrong or that's not the case with me. I've had it long enough to realize that stress plays an important part in trig
ering its return. If you have any information that would be beneficial to me please feel free to sent it to my e-mail address. Thank You
06/15/99 01:56:15
| Name: gerry kirschbaum |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have separatel e-mailed you. Thanks
06/15/99 00:53:38
| Name: Molly |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Am I the only one w/sarcoidosis in the sinuses? It is awful. I been sick for 2 1/2 yrs, do not have a DR. to treat me, and is not a candidate for Prednisone. (It causes G. I. bleed)I live in Northern NJ. If anyone has info Please e-mail me.
06/15/99 00:46:09
| Name: molly |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
05/30/99 14:15:14
| Name: Chris |
| My Email: Email Me |
Comments:
I am a 44 year old male from Essex, England, I was diagnosed with Sarcoidosis in February 1999.
I am still trying to find out about Sarcoid as my doctor told me very little. He said there was no cure but in most cases it just goes away.
Since then I have seen so much about it on the Internet, so many horror stories I don't really know what to think anymore.
If you suffer with Sarcoidosis I would love to hear from you, maybe we could chat on ICQ, my number is 24527172.
05/30/99 14:13:43
| Name: Chris |
| My Email: Email Me |
Comments:
I am a 44 year old male from Essex, England, I was diagnosed with Sarcoidosis in February 1999.
I am still trying to find out about Sarcoid as my doctor told me very little. He said there was no cure but in most cases it just goes away.
Since then I have seen so much about it on the Internet, so many horror stories I don't really know what to think anymore.
If you suffer with Sarcoidosis I would love to hear from you, maybe we could chat on ICQ, my number is 24527172.
05/30/99 14:13:29
| Name: Chris |
| My Email: Email Me |
Comments:
I am a 44 year old male from Essex, England, I was diagnosed with Sarcoidosis in February 1999.
I am still trying to find out about Sarcoid as my doctor told me very little. He said there was no cure but in most cases it just goes away.
Since then I have seen so much about it on the Internet, so many horror stories I don't really know what to think anymore.
If you suffer with Sarcoidosis I would love to hear from you, maybe we could chat on ICQ, my number is 24527172.
05/11/99 09:25:16
| Name: Chris Townsend |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thanks so much for signing my guestbook. For some reason, I never knew before that you have your own Web Page. You've done a very nice job with it. Wish I could join in your chat, but I don't have AOL (just becoming available in Australia and very expe
sive). Have you ever considered having it somewhere that is accessible to more individuals? Take care and keep smiling. . . .
04/22/99 20:26:44
| Name: Carole Golin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Great job.
04/20/99 04:31:09
| Name: Kathy Griffin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda:
Will you be attending the conference on 4/24/99? If I wasn't on home oxygen I would be there in a jiffy because I would like to hear Dr. Om Sharma and hopefully meet you. I will be looking forward to your comments re: the conference if you're going. Thank
for listening.
04/20/99 04:28:32
| Name: Kathy Griffin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda:
Will you be attending the conference on 4/24/99? If I wasn't on home oxygen I would be there in a jiffy because I would like to hear Dr. Om Sharma and hopefully meet you. I will be looking forward to your comments re: the conference if you're going. Thank
for listening.
04/16/99 06:28:17
| Name: Leah Smith |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
04/13/99 03:24:52
| Name: joanne |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda,
G'DAY! I am from Melbourne Australia and was diagnosed in August 1998. I am a University student and currently doing a casestudy on myself, but find it difficult to access in depth medical knowledge, e.g why elevated Se ACE does not effect blood pressure
n the patient with sarcoid. I would appreciate any assistance/guidance. Thanking you.
04/10/99 03:57:24
| My URL: Visit Me |
| My Email: Email Me |
Comments:
04/01/99 20:51:35
| Name: Connie Acerno |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda, Thank you for the info. I was diagnosed four yrs. ago and do not know anyone else with this diseease. I will join you tonight in the chat room.Thanks, Connie
03/28/99 03:58:21
| Name: nereida |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I would like to thank you for all the wonderful information you sent not only to myself but to meny others.I feel some times like there is not enough information out there for one to read such as other cases or new findings.If you need help in any way ple
se let me know. I feel you are a brave person to want to help others. Again I thank you for all the help you sent me. May GOD BLESS YOU AND TAKE GOOD CARE OF YOU AND YOURS.
03/20/99 12:12:59
| Name: Linda |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My husband got sick on Valentine's Day with what we thought was the flu. On March 5th we found out that it was Sarcoid. All the initial symptoms are gone now except for the cough. His chest x-ray already show Patterns of Sarcoid.
I sit here wondering what his health will be like in the future.
Linda
03/11/99 00:02:10
| Name: Vonda Miller, R.N. |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda,
Please lets talk about sarcoid. I have sarcoid and am going to be doing a booth at Andrews Air Force Base on these disease at an upcoming Health Fair. Trying to get info. to hand out and I'm seriously thinking about petitions to take to Congress fo
more research money. My husband works at the Pentagon and needs to meet with Senators so I'm going along to put a bug in some ears about these disease. Please write back and let me know if we could speak on the telephone. Thank-You for taking time to
care.
Love, Vonda
03/11/99 00:02:01
| Name: Vonda Miller, R.N. |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda,
Please lets talk about sarcoid. I have sarcoid and am going to be doing a booth at Andrews Air Force Base on these disease at an upcoming Health Fair. Trying to get info. to hand out and I'm seriously thinking about petitions to take to Congress fo
more research money. My husband works at the Pentagon and needs to meet with Senators so I'm going along to put a bug in some ears about these disease. Please write back and let me know if we could speak on the telephone. Thank-You for taking time to
care.
Love, Vonda
03/11/99 00:01:57
| Name: Vonda Miller, R.N. |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Dear Brenda,
Please lets talk about sarcoid. I have sarcoid and am going to be doing a booth at Andrews Air Force Base on these disease at an upcoming Health Fair. Trying to get info. to hand out and I'm seriously thinking about petitions to take to Congress fo
more research money. My husband works at the Pentagon and needs to meet with Senators so I'm going along to put a bug in some ears about these disease. Please write back and let me know if we could speak on the telephone. Thank-You for taking time to
care.
Love, Vonda
02/28/99 22:37:07
| Name: Tina Hansen |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I´m from Denmark. Hi ...
I´m so glad that Ì´ve found some tings about this desease. Since 1992 I have lived with this desease, and now it influence my day a lot. I´ve been alone with my worries, because there are nothing to read about Sarcoidosis in Denmark. I don´t think anybody
in my family knows how much it influences my day. And lucky me, I´m on the Internet.
Tina Hansen
02/28/99 19:17:51
| Name: Carol Leonard |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed about 3 years ago with sarcoidosis. I am now beginning to help myself by looking for way to fight.
01/28/99 16:23:39
| Name: Jenifer |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for all your resources on sarcoidosis. I started all this on Dec. 23, when I went to the emergency room with bad pain in my lower right "ribs". They took an xray and diagnosed me with pneumonia. After 5 different antibiotics and antifungals,1
days in the hospital with IV's, and still no improvement, they did a lung biopsy. 2 days ago (Jan. 26) they diagnosed me with sarcoidosis. At this point, I am just happy to have a name for this thing going on in my lungs! And I am very happy that you a
e sharing all this much needed info with me and others who need it. See you tonight in chat! Thank you millions.
01/28/99 15:55:48
| Name: Jenifer |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for all your resources on sarcoidosis. I started all this on Dec. 23, when I went to the emergency room with bad pain in my lower right "ribs". They took an xray and diagnosed me with pneumonia. After 5 different antibiotics and antifungals,1
days in the hospital with IV's, and still no improvement, they did a lung biopsy. 2 days ago (Jan. 26) they diagnosed me with sarcoidosis. At this point, I am just happy to have a name for this thing going on in my lungs! And I am very happy that you a
e sharing all this much needed info with me and others who need it. See you tonight in chat! Thank you millions.
01/19/99 15:17:23
| Name: Carol Leonard |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
01/19/99 14:37:50
| Name: Carol Leonard |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
01/12/99 09:36:05
| Name: tinajean |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi all, Hopefully someone out there can help me,I have had sarcoidosis for almost 2 yr's and it's effected my lungs,ears,eyes,skin,and more. But now it looks like its effecting my heart and blood vessels I have not heard much about it doing this .Do's any
ne have any information about this and what could help with it? I would realy appreicate any help please contact me thank you tinajean
12/26/98 21:16:17
| Name: Bea McManis |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda,
My daughter, Susan, was recently diagnosed with Sarcoidosis. She, too, has developed a web page and is working her way through all of this.
As a parent, it is most difficult to know what is the right thing and what are the wrong things to say and do.
Of course, I know she is aware that she is loved and there is tremendous support for her and her family, but we all seem to be walking on a path paved with ignorance.
Thank you allowing me, and others to learn first hand about sarc and how we should be handling it.
12/12/98 13:27:56
| Name: Carole Thomas |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My mother has had sarcoidosis for about 27 years, and is really having a hard time with it now. Are there any herbs that she could take to help her breathe? Is there anything she shouldn't take along with her medication (prednisone, theophylline, feneci
) that would hurt her rather than help her. She is looking for ANYTHING that would help her to breathe.
12/10/98 05:39:12
| Name: msmodelnique |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
hello Bren: Just thought I would give you a shout. Ive been exp. swelling in my ankles lately, & my sinuses have been doing the fool. Otherwise Sarcoid. has been treating my so-so. My body I believe is tired of steriods, but everytime we taper down, I
become symptomatic w/new side effects: Like uncontrollable low blood sugars & low blood pressures. In the past, once tapered, I would exp. stoke-like symptoms at as little as 10mg. but these went away once raised to at least 20mg. It's scary, ea. occur
nce because you sometimes feel that this episode can cause irreversible damage to some organ. The Sarcoid. is in my central nerve system & has basically been there since 1983. Bren, I'm afraid sometimes due to not knowing what's next evem after all my e
tensive research over the yrs. & my positiveness to others, just keeping them focused & uplifted. I share all I can w/all who seeks but I guess sometimes angels need angels too.(smile). Just had to shed a little weight-talk to you soon
12/07/98 03:34:51
| Name: Susan |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have been diagnosed with sarcoidosis in my lungs. I am interested in finding people who have the sarcoidosis. Thanks Susan :)
11/20/98 17:10:42
| Name: Mary AnnHelfrich |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
11/16/98 16:35:32
| Name: nita Currie |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed with sarcoidosis in October, after MANY years of various problems, including asthma. I was initially relieved to finally have a name to associate with this illness and was led to believe that this really wasn't all that serious (from the l
terature I was given and from my initial research. However, as my research has progressed and I found the sarcoidosis online pages, along with the messages from other sufferers, I am beginning to get a more clear picture of this disease.
I am a little scared. I feel alone - in that most of my friends decided a few years ago that I am just lazy because I am always tired. I guess they are also tired of hearing this - so am I. I don't have any family - so there really isn't anyone to unde
stand what I am going through.
I also have questions about this illness.
I live in Hanover Park, which is a Western suburb of Chicago. Do you know if there is a support group here? I noticed that there are two, but both are really in the Chicago area, which is really far for me.
Thanks for listening.
11/13/98 19:38:30
| Name: Christian hannotte |
| My Email: Email Me |
Comments:
Hi, I'm from Denmark and I just found out that i have sarcoidosis , my doctor can't tell me much about this desease, so I am realy happy to have found your site about this desease. My doctor is now giving me "prednisolon" , it is now the 3. day that i ta
e this medicin, and i'm realy not to happy about the reactions that my body is comming whit. I realy don't know much about sarcoidosis, so if any one could write me about it, and maybe tell me more about it, I would be so happy :-)
10/18/98 05:54:48
| Name: Mark Norman |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
what a great site...im sure this will enlighten many visitors, those with and without sarcoid.
just like in the chatroom, you have done a wonderful job.
keep up the good work...P,L,H, mark.aka. turbs
10/17/98 03:44:02
| Name: mhelf54111 |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
10/08/98 15:52:53
| Name: Nate Harris |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
your web site is great keep if up.
10/07/98 04:01:03
| Name: Catherine Shultz |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda, Great website. I had sarcoidosis in 1996-lungs and lymph nodes. The sarcoid cleared but then I was diagnosed with fibromyalgia and chronic fatigue immune dysfunction syndrome and am still disabled from all of this. Does anyone else have similar
experience? Thanks for this support.
10/01/98 02:53:20
| Name: mary ann |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
new to site.Diagnosed with sarcoidosis since 1984. Really don't know much aabout the disease.
10/01/98 02:50:58
| Name: mary ann |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
09/16/98 16:51:01
| Name: Felicia Burns |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I enjoyed this page. My mother passed away with this disease and I just feel that I need to know more about it. If you have any more info. dealing with this please e-mail me. I really would appreciate it.
09/14/98 20:36:28
| Name: Carrie Buckley |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Your site is wonderful, Brenda! I have had sarcoidosis for over 12 years and I start a support group in Champaign, IL. If anyone in my area is interested in becoming involved, please call me, Carrie, at 217/356-7010. We meet the 3rd Thursday of every m
nth. Thanks.
09/12/98 00:52:24
| Name: Maryann McLaughlin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda--Thanks for your support!! I have had sarcoidosis with lung involvement since 1991. It's been a long 7 years. The support from you is much appreciated. Support from others who can truly understand what we are feeling is the best kind!! Take ca
e.
09/04/98 02:47:20
| Name: TIM KIGGINS |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda,
My name is Tim Kiggins. I was diagnosed with sarcoidosis in the lungs from a lung biospy, the 28th of August 1998. I am new at this sarcoidosis ailment and would like any and all information that you may have. My doctor has said that information fro
an EKG I took has shown that it may have moved into the right ventrical of my heart. I live in Xenia, OH ( near Dayton, OH). My doctor has started treating me with prednisone. Any comments about this? Right now I feel like I am in an unknown world that m
st doctors have never heard of this desease. I know my family doctor is one of those.
09/01/98 15:27:25
| Name: Steve Chinn |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for the site. I'm looking for similar in Europe/UK. Do you know of one?
08/31/98 22:12:07
| Name: Sonja Y. Jones |
| My URL: Visit Me |
Comments:
Hello Brenda,
You are God-sent is all I can say. My cousin has severe pulmonary sarcoidosis and was denied any disability assistance just because she try's to work 1 weekend out of a month. She very much needs to talk to you via the telephone. She is so upset and needs
some uplifting.
08/30/98 21:55:57
| Name: frank cassidy |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
08/29/98 22:39:40
| Name: john conklin |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
08/17/98 08:27:51
| Name: John Conick |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Found site usefull in first try. Amazing!!! Have contacted a member about a USN study of the disease. Also wondering if there are others out there like me over the 20-40 age bracket that is used in the diagnosis. The only way I qualify is to add the two t
gether and then add a few more.
08/15/98 17:28:38
| Name: Michael Stolzle |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
brenda,
Thanks for having this service. I had the same situation last year with pneumonia and the doctors are almost worthless. I had to fight them to just treat the symptoms. I seems that they sarcoidosis as an excuse to do nothing. I have fired at least 15 alo
g the way. Thankfully, I am doing better, but still have some very bad days. We live in schaumburg, IL a suburb of Chicago. Please let me know if you or anyone in the group have a good physician that we can contact about this.
My last chest xray(5/98) still shows no change.
Regards, Michael Stolzle.
08/14/98 19:38:11
| Name: Rose Hardy |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
This is great! I will add this to my favorite
places file. Thanks !
08/03/98 18:07:35
| Name: quintin |
| My URL: Visit Me |
Comments:
hi nice page
08/01/98 19:25:26
| Name: Charline |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I have just been diagnosed, but suspect this has been going on for some time. Want to learn all I can.
07/29/98 13:14:58
| Name: Chuck Ragland |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I appreciate your kind E-mail. Following years of not knowing what I had, a physician recently diagnosed me as having sarcoidosis. I'm looking forward to being involved in sarcoid awareness efforts. Be encouraged and keep up the good work!
07/29/98 03:25:24
| Name: Sontha |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Enjoyed your page. My mother has sarcoidosis. Had allergic reaction to prednisone. Now has cushings syndrome. Any info or websites you know of is appreciated!
07/25/98 22:16:15
| Name: Darlene Harding |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I just found out i have sarcoid. Really don't know too much about it and wondering about my future. Really get fatigued alot.
07/25/98 16:16:34
| Name: Sal Catalano |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hello there.
I am trying to find more information on this illness and how it realted to other conditions. My cousin is turning 30 in 1 week and was diagnosed with sarciodosis a few months ago. He is now in the hospital due to a blood condition which affects his plat
et level. A low platlete level cause continuous bleeding if you are cut.
Do you know of any relation between the two.? He is also taking Prednisone to increase the platlete level so a biopsy can be taken from his lungs.
If you have any info or know where I can find it regarding my cousins' condition plesase let me know.
Take care and God Bless!!
SC
07/22/98 00:16:58
| Name: Kate Mays |
| My Email: Email Me |
Comments:
I think that this is a great way to let others know about SARC. I'm forwarding this site to friends and family so that they can also learn more.
07/21/98 03:01:26
| Name: Mary Tabone |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed in June of 1988. What had been mis diagnosed as borne homes disease and/or anxiety disorder turned out to be (after definitive bronchopcopy) sarcoidosis. Have since found a wonderful doctor and have finally managed to remain not in remiss
on, but stable. Glad to have wofound out about this group and the many resources you have shared.
07/18/98 13:26:35
| Name: Sandy Wooldridge |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Very interesting Brenda. You are a very large asset to us fellow sarcoidians, if that's a word. You know what I mean. Thank you so very much for all the information you pass on to us. Your knowledge becomes our knowledge. Bless You
07/18/98 13:20:34
| Name: Sandy Wooldridge |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Very interesting Brenda. You are a very large asset to us fellow sarcoidians, if that's a word. You know what I mean. Thank you so very much for all the information you pass on to us. Your knowledge becomes our knowledge. Bless You
07/17/98 05:34:17
| Name: Kimberly Sullivan |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hi Brenda. Just stopped by to visit your page and get some more info on sarcoidosis. I'm sure you're page has provided much needed info for a lot of people. I also want to thank you for the help you've given me. I really appreciate it.
07/15/98 03:42:37
| Name: Sonja Y. Jones |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
07/13/98 20:42:29
| Name: David Byrd |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was diagnosed in June 1963 by the U.S. Navy. Until now, I have had no problems or symptoms. Now it appears that not only has the sarcoid reappeared, but I also have fluid around my heart. We're in the diagnosis stage right now to determine whether my
problem is sarcoid or something else.
Do you know of any situation where sarcoid may have attributed to fluid around the heart?
07/11/98 04:07:07
| Name: Richard |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I was/am a triathlete who was diagnosed with pulmonary sarcoidosis in Feb 1997. Battled it down with pred for a year but its back. Yuck. I am currently suffering minimal symptons except for pred-dread....Any homeopathic alternatives to prednisone?
07/09/98 17:14:18
| Name: Erma Adams |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for the work you are doing to educate the public about this disease. I was diagnosed with sarcoid in May of this year. I am doing well on medication and I am keeping a positive attitude about this disease. I will not let it get me down. God bles
you.
Erma Adams
07/09/98 00:28:04
| Name: Cathy Curran |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you for offering this outlet. I was at the Memphis conference and thought it was wonderful. Looking forward to Seattle! It is so gratifying to know there are other people out there who know what this feels like. I wish there were a support group
in the Portland area, and would welcome e-mail from other sarcoidosis patients. I am actually doing well now, still on cortisone but almost done, after two years of prednisone. Not my favorite prescription, but it seems to have done the trick. I was dia
nosed April 1996 with the illness in my lymph nodes. I have begun to feel ALMOST like normal, and recently released five balloons on a Portland hill, each printed with a negative aspect of sarcoid, with a sixth with a word which represents the future. I
know I can make it now, and truly, there is a light at the end of the tunnel for everyone with this illness. Cathy
07/04/98 19:53:13
| Name: Robin Fellure |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thanks for sending me all the interesting e-mail info. Have you ever been to Henry Ford Hospital?
06/13/98 23:45:15
| Name: Lisa |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
My father has been suffering from sarcoidosis, and am looking for info on this disease.
06/11/98 15:52:43
| Name: Susan DeSantis |
| My URL: Visit Me |
Comments:
Please write to me:
Susan DeSantis
314 Briggs Avenue North
Forked River, NJ 08731
06/08/98 15:17:52
| Name: Gayle Loyola |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
06/07/98 02:24:57
| Name: tyndale Hurry |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
love your web page I'll tell helen,sandra, and dee dee
tyndale
06/07/98 02:23:14
| Name: tyndale Hurry |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
love your web page I'll tell helen,sandra, and dee dee
tyndale
06/06/98 03:26:59
| Name: Barb Kennedy |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
This is so neat to have a support group here. I'd like to get one started in INDY to help others out with Sarcoisosis!! Thanks!!
06/06/98 01:34:27
| Name: Jay |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Hey Brenda!
Really nice looking site! I've seen many things here that I haven't seen anywhere else.
Great layout and design!
05/22/98 02:00:34
| Name: Janice Bristow |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda,
Your Webpage looks great. Thank you for the wonderful meeting last night. Dr. Jenkins gave me alot to think about. It was nice to meet the other members of the support group.
God Bless you in all your work to support and educate the world about sarcoidosis.
J. Bristow
05/13/98 17:44:55
| Name: Yvonne Hooper |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda, you did a fabulous job on this site. I am so proud to be your friend! This is awesome and I hope you continue with it.
Love your friend....yvonne
05/13/98 01:07:40
| Name: Linda Young |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Thank you, Brenda. This is a great site and very informative. I was told in Jan. '98 that I have pulmonary sarcoidosis. Finding information on this disease has not been easy. It is great to know there is a place to go and "chat" with someone else with si
ilar problems.
Thanks again.
05/11/98 21:26:28
| Name: Joyce Hopkins |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I am excited each time I find something new on Sarcoid, I have had such a hard time learning about since I was diagnosed in January.
Thanks for the effort to share information.
Joyce
05/06/98 20:18:20
| Name: Karl Verdun |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
I just sent a note regarding My Best Friend Eileen
and have nothing more to add
Thanks...K2
05/06/98 20:15:47
| Name: Eileen Clark |
| My URL: Visit Me |
Comments:
This note is written by her boy friend Karl and I
also have Sarcordosis (April 1972), Eileen does not have an E-mail adress yet. Eileen was diagnosticed April 1998, and we are just starting our journey through the info on sarcordosis.
Thanks for your efforts
Eileen & Karl
05/06/98 20:15:36
| Name: Eileen Clark |
| My URL: Visit Me |
Comments:
This note is written by her boy friend Karl and I
also have Sarcordosis (April 1972), Eileen does not have an E-mail adress yet. Eileen was diagnosticed April 1998, and we are just starting our journey through the info on sarcordosis.
Thanks for your efforts
Eileen & Karl
05/06/98 20:14:59
| Name: Eileen Clark |
| My URL: Visit Me |
Comments:
This note is written by her boy friend Karl and I
also have Sarcordosis (April 1972), Eileen does not have an E-mail adress yet. Eileen was diagnosticed April 1998, and we are just starting our journey through the info on sarcordosis.
Thanks for your efforts
Eileen & Karl
05/03/98 23:33:16
| Name: Rochelle Black |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
GREAT JOB BRENDA, KEEP UP THE WONDERFUL JOB.
05/01/98 09:03:48
| Name: Umesh Singhal |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
hi brenda,
great to find you here? i didnt know that you were having a home page too for sarcoidosis.
with this, you can also put all the material that you have got, rather than providing links to other sites.
bye
umesh
04/30/98 22:21:47
| Name: LAUREN O'Donnell |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
04/11/98 18:53:43
| Name: Nate Harris |
| My URL: Visit Me |
| My Email: Email Me |
Comments:
Brenda your web site is coming along!
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