Mastocytosis Update

Valentine's Party 2015
Lincoln is now 3 years old (and 5 months). He was first diagnosed with mastocytosis at age 6 months. Mastocytosis is a rare skin disease where mast cells are clumped together and can cause an itching reaction when the lesions are irritated or stimulated. The reaction can be caused by foods, temperature, and emotions.

Lincoln did go to a dermatologist shortly after his diagnosis. The dermatologist was not alarmed by the extent of Lincoln's condition. As a matter of fact, he had no worries. He said it may go away at puberty. He has 5 lesions total (cheek, chest, back, side, and bottom).

Christmas 2014
Last week, was the first time that Lincoln showed a sign of being uncomfortable by a lesion. I was getting him dressed for bed and he was itching the underneath side of his bottom. He said, "A bug bite is itching!" I told him it was a lesion. That lesion popped up when he was an infant around the time of  the diagnosis. I saw it every time he had a diaper change so I know it has been there a long time. His underwear or the carpet may have irritated it this particular time.

Other than that, his original lesion on his chest shows the most irritation from car seat straps, bibs, and wash clothes. Sometimes acidic foods and wash rags will irritate the one on his cheek.

He has been taking dance lessons since September and he plays as hard as any boy so there haven't been any limitations on activities. There have been a lot of strangers read and comment on my original mastocytosis post from 2012 so I thought I would share that a diagnosis isn't "doom and gloom" as the Internet may suggest.

What has your mastocytosis journey been like?
R


Comments

Barkerk said…
Love seeing his happy face and reading your story it’s giving me hope. I’ve been in a dark, doomy place since finding out my 5 month old most likely has the same thing. He goes to get his biopsy done in January.
December 9, 2021 at 8:15 PM
Barkerk said…
Love seeing your story! It gives me hope and faith that our little 5 month old will be okay. He goes to get his biopsy done in January. I’ve been reading online… I want to be informed but some is scary. My son got two mosquito bites that turned into lesions and now more and more are showing up. Thank you for sharing your story!
December 9, 2021 at 8:22 PM
Rebekah said…
Oh, you are welcome! My boy is 10 now and no new lesions and still living a healthy life. 🙂
December 9, 2021 at 9:32 PM
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