The reasons for this page are two: One to tell Jackie's story and second to help with the questions people have concerning their own disease. My hope was one day that we would be able to help parents deal with the ups and downs of this disease. Now we have filled that hope! (After 19 years!!!) My dream is that one day this disease will be treatable. (Hope we don't have to wait another 19 years!)

At birth, Jackie was born with spots. For several hours I was not allowed to see my baby. My brother and his wife, being at the viewing window, saw Jackie when she was there. They were told that they could not see me because the doctors were afraid that they would tell me about her spots. Jackie was moved to an inside room - out of sight.

Finally my baby was brought to me and I thanked God for this small gift. I was so enthralled in her that I overlooked the worrisome spots! (I thought that the labor was just a difficult one!) Eventually when the doctors kept coming in and telling me not to worry about her appearance, I began to worry. At 10 days old these spots were diagnosed, by biopsy, as Urticaria Pigmentosis. Her first blister (water) showed up in 10 days covering almost completely the back of her little hand. In the days, weeks, months and years to follow there were many water and blood blisters. The medical books that we read said that there were 8 different kinds of blisters. To date, we have seen 11 different kinds. Many of the blisters were treated differently. Only one doctor in this area had seen this disease before.

Along with the blishering, she Flushed.

Age around 4 yrs

Having, Urticaria Pitmentosis, makes her immune system low and she catches both flu and colds easily. For the first nine months after she was born we only went to the doctor's office and the grocery store. After nine months, my husband and I decided that we needed to live a normal live with Jackie.

People can be cruel - we have been turned into Health and Welfare and the police department for child abuse several times. We have had people ask if she had the chicken pox or cigarette burns. We have had people leave the restaurant table next to us when we came in - leaving their dinner behind. They have asked waitresses to ask us what was wrong with our child. We have been asked to have our children leave public restrooms so their children could use the facilities.

Babysitter Problems

Bumping, scratching, falling off a chair, would cause Jackie to blister. Sometimes we had more than 24 blisters at a time. We were told to keep our house clinically clean or the authorities would take her away from us.

The State of Alaska offered to take her and supply us with a house in return. All of our family medical bills would be paid "for life". The only catch being that Jackie would live in the hospital. We said no thank you. The State of California also offered to take Jackie - again no thank you.

We knew that there were four children in a Boston hospital (born the same year as Jackie with Urticaria Pigmentosis). The parents had given up their rights to the children. Around the age of 12 the children were moved to a California hospital. We were told that Jackie and these four children were the only ones in the United States with this disease.

age 18 : Just back from Spain with a good tan! As you can see - over time they do get better! Since finding the Mastocytosis Society a few months ago, we now know different. This being a rare disease - it is not as rare as we were led to believe.

School was hard! The first two years she was home taught. She started going to school in the third grade. She made great life long friends. Others (there are always - others) would kick her just to see her blister and flush. Teachers also could be cruel. She was sick every year 45 days or more. Tips on School

She was not allowed by the doctors to take P.E. - over-exertion caused flushing and blistering and gastro-intestinal cramping. Counselors gave her a bad time, indicating that she was faking her illiness. Once a year (with the exception of about four since birth) her feet and legs blister and she goes into a wheel chair for about 10 days.

In her Junior year she had chicken pox. THE DREADED DISEASE! She was afraid that she was going to die, because of what the doctors had told us over the years. She slept on a make shift bed by me every night for months - holding my hand as she went to sleep.

She experiences an occasional water or blood blister today, only does particial flushing - no more full body flushing, has gastrointestinal cramping and is a shocker now for the past 5/6 years. Because she is now an adult with Urticaria Pigmentosis, she has an 80% chance of getting Systematic Mastocytosis. Systematic Mastocytosis people have to be careful of what they eat (peanut butter, food dyes, bananas, the list is long) because the gastrointestinal cramping can be a major problem.

Jackie was allergic to milk when she was born. We tried all formulas - finally out of frustration - I gave her a bottle of Hi-C orange juice. This turned out to be the only liquid other than water that she could tolerate for a few years.

We are currently running a test to see if Jackie has this. Hopefully they can medicate her for the cramping and shocking which has now become a problem. The tests are over - they came up blank. However, her doctor here called a doctor in Boston and they have figured out a better medicine regime. He also has told her that when she has to go into the hospital for her shocking to tell them that she has Systematic Masto instead of UP because the UP always throws them and they don't seem to know what to do with her.

Jackie is now a flagger! (Out in the hot sun!) She has done this for about two years now. On the really hot days, she comes over for a dip in the small swimming pool and then when she gets cold goes to the hot tub (which is set at 98 degrees) The only reason we can attribute to her being able to stand the sun is that we think chicken pox changed something in her chemical being. She loves her job. She does not have the stress of gossiping, fighting or bickering personnel. The doctor told her to change jobs because she was shocking so much. Since her new job, flagging, she has not had one shock!

note of interest: Years ago the doctor gave us a prescription for a swimming pool which we took off under the medical on our taxes.

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