Beauty behind their Spots – Mastocytosis

Savannah

Savannah was born with some of her Spots. Doctors said they would go away or they were just strawberry birth marks. Then a few weeks later they would flare up, look angry and blister. Her tiny body would go instantly red with a rash all over. So would go see doctors to get help. No one knew what was wrong with her til she was 3.5 mths old and a dermatologist prediagnosed her with a rare condition called Mastocytosis.

She had a sub type condition called Urticaria Pigmentosa (UP). And that’s when the roller coaster journey really began for us. With specialist appointments and testing being done to confirm and then the medications began and then the list of do’s and dont’s with her. We already knew that being outside affected her. Pollen, trees external heat from the sun and even when I ate something she would react severely. I breastfed for the first 12 months. So even I had to watch what I eat. Even surgery could cause her to react and after having her first surgery at 8 months it was the most terrifying day ever.

Now she is 2 and although she has good days we still have slot of bad days. Body aches and pains, dislocations, can’t eat certain foods or take certain meds, have behavioural issues we are dealing with, hives, blisters, rashes, GI issues, meltdowns and head aches are just some of the daily issues we deal with. You see Mastocytosis is a condition which produces too many Mast cells (Histamine). For us who don’t have it, we need it to stop us from getting sick and going into anaphylaxis if we get stung by a bee or eat the wrong foods, etc but for Savannah she produces too many Mast Cells (Histamine) which can be deadly and cause her to go into anaphylaxis. Hence when you see her you’ll see all her spots on her body. Another easier way to explain it is like Savannah has hundreds of Ants crawling all over her body inside and out and biting her continuously until I can either give her her medication or an epi pen. Pending on the severity of her reaction.

For Savannah she will never know if she out grows this when she is a teen or older or if she’ll have it for life. Some do out grow and some don’t. There isn’t any cure for this disease. We can only pray she does. Til then we make her life as comfortable as possible. We have a small support group where we meet up yearly somewhere around Australia for our national conference and we also have websites we can talk to other families when we need help.  I’m so great full to have them as I have learnt so much from this disease. Specially since it’s so rare most doctors have never even heard of it and I’m telling them what needs to be done with Savannah. And the fact that all her meds are either compounded or brought in from other countries as we don’t have them here so can be costly. But the cost isn’t an issue its about making sure Savannah gets the best health care and has a life that can be as normal as possible.

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