February 28, 2011
To the Editor:
I am writing to recognize Rare Disease Day today (February 28), which has been recognized by the state of New York. This day acknowledges all rare diseases such as mastocytosis, from which my 6-month old son suffers. In recognizing this day, we are hoping for more funding for this severely under-researched disease. It affects each child differently, and afflicts less than 200,000 people in the world.
My son Max has had over 20 reactions so far In his short life to cold temperatures, certain foods, smells, changes in barometric pressure and his emotions as well as to certain medications. He has a solitary mastocytoma on his wrist that will hive when he is exposed to a trigger, causing full body flushing, and then blistering of the hive. The worst reactions can cause him to go into anaphylactic shock which, thank goodness, we have yet to experience.
As he grows, he will have to have limited exposure to the sun, which means he can't play like other kids. He won't be able to eat things other kids can, like ice cream and pizza. He will have to carry a medical kit to school and on every trip with his class. He is already seeing four specialists, all of whom admit their knowledge of this disease Is lacking. Medical residents have attended each office visit in eagerness, after being told they will likely never come across another case like this in their careers. As of now, Max's blood tests indicate that his illness is not systemic, but still causes severe abdominal pain and gas as well as excess stomach acid. It will likely affect his respiratory system as well.
Seeing my baby go through this has been difficult, but I know he has a mild version of the disease. Please recognize today for Max and all people who suffer from a rare disease. Thank you for your time and attention.
Carrie Furman
Cornwall-on-Hudson
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