"For I know the thoughts that I think toward you, says the Lord, thoughts of peace and not of evil, to give you a future and a hope." -Jeremiah 29:11

Do I have chicken pox or measles you ask?  Nope.  I have Cutaneous Mastocytosis.  That was a mouthful.  Let me break it down for you.  It's a skin disorder and it is not contagious.  

When I was just shy of 2 months old my parents started seeing these weird blisters appearing randomly around my body.  A few on my tummy, a couple on my thighs and arms.  My parents took me in to the pediatrician for an examination.  They were told that it was just eczema.  But my mom and dad didn't believe it or the way the doctor brushed it off as eczema.  About 2 weeks later my body was covered in about 50+ spots so my parents took me back in to see the doctor.  The next diagnosis was that I had hand, foot and mouth disease.  It's a common childhood virus where a blistery rash appears on the hands, feet, and in the mouth.  It can take up to two weeks for the symptoms to go away.

My parents still didn’t feel right about this diagnosis but they went home to wait it out.  Every week for a month I was seen by the pediatrician as more spots appeared but no other hand, foot and mouth symptoms were seen.

By the end of that one month, my body was covered in hundreds of spots and I was finally sent to see a pediatric dermatologist.  Unfortunately, it was going to take 3 months to be seen by them.  My parents were so discouraged and afraid at what was going on that they just wanted to be seen by anyone that could give them answers.  They settled for an adult dermatologist hoping that a biopsy would be conducted.  So two weeks later I was seen by an adult dermatologist who biopsied one of my spots.

The day before Thanksgiving 2017 my parents found out that I had Mastocytosis.

The adult dermatologist wasn’t too familiar with treatment other than using topical steroids.  My parents went home and did countless hours of research.  We found out that Mastocytosis affects 1 in 200,000 people.  It is a rare skin condition and it affects each person differently; it can also look different too.  Some people with this condition can have hundreds of spots.  Some have one spot.  And some have no spots.

Mastocytosis is a condition that affects mast cells.  These cells are found in white blood cells that are secreted by our immune system.  My body overproduces these cells.  Mast cells are responsible for releasing certain chemicals like histamine. This chemical is supposed to help our bodies with inflammation and infection. For instance, histamine is released when we are stung by a bee or eat a certain food that our body does not agree with.  My body can’t regulate histamine so the spots on my skin are a build up of histamine.  When they are agitated by heat or friction they become raised, red and itchy.  If too many become “angry” I have episodes that are called “flushing”.  My body turns bright red like a cherry.  This tells my parents that something is wrong and that I need my rescue medication.  People who have Mastocytosis have different triggers that make them flare.  Some people can flare due to environmental triggers like scents, cleaning products, fragrances or weather.  Some people are affected by food, medications and antibiotics.  And still some are affected by insect bites.  Some of them suffer from all of these triggers.  So far my parents discovered that I’m triggered by heat, illness, friction and emotional stress (when I’m upset).

Today, I have a new set of doctors who are well versed in my diagnosis and have helped me reach a happy medium.  I am doing well with the daily anti-histamines.  I have even been able to cut back on my doses.  My parents still have to carry an Epipen at all times just in case my rescue medications don’t help me.

Other than daily itchiness I am joyful.  I love to laugh and play.

I am a light in this world.

I will not succumb to this condition.

I will persevere.

-Polka Dotted Princess

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If you would like to read more in-depth information about Mastocytosis and/or Mast Cell Disorders, please visit the following links:

tmsforacure.org

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mastokids.org