Patrick the Rabbit

UP - Urticaria Pigmentosa

Patrick woke up to the smell of fall coming in his bedroom window. There were leaves drifting through the air and the breeze carried with it just the hint of the snow that would be coming in the next couple of months. He shivered with delight. Fall was a glorious time full of wonderful changes. As he got out of bed Patrick noticed that some of his spots were a bit redder today, some standing out a bit more than usual, and he also had a few hives. Different things made his spots flare, or stand out a bit more, and weather changes were one of them. For a moment he stopped being happy about the fall breeze but then he remembered about his plans with his best friend, Kyle, to fly kites today.

Patrick jumped the rest of the way out of his bed and raced downstairs, kissed his mom on her cheek, grabbed a granola bar and his kite and yelled goodbye as he raced out the door to the field where he was going to meet Kyle.

The wind was blowing just enough to be perfect kite flying weather and not enough to make the day too windy to be fun. Friends from all over the forest were showing up to fly their kites. They waved at Patrick and then went back to working on getting their colorful kites into the air. A few of the new kids kept glancing at Patrick and whispering to each other.

Patrick hunched his shoulders and turned away from the field. Kyle came bounding up behind him and gave him a big hug. “Where are you going?! This is the perfect kite flying weather!”

“I’m not sure I feel like it anymore… I don’t think everyone wants me here,” Patrick whispered.
Kyle looked at the new animals and said, “Psh, they just don’t know any better! Remember when I first met you? I asked you a bunch of silly questions and was sure that you were going to make me sick. You told me – very loudly too, ‘Not all spots are contagious! Now stop being silly and come play with me!’”
Patrick smiled, “I had forgotten about that. And now we’re best friends!”
Kyle laughed, “Exactly! Don’t worry, they’ll learn too.”
Patrick’s smile widened. “You’re right, they’ll learn. Let’s get our kites in the air before the wind dies down.”

A little bit about Mast Cell disorders and UP (urticaria pigmentosa):
Mast cells are a part of nearly every system in our body. They come from our bone marrow and are the ‘master helpers’ of the body’s fight against infection from colds and flu, inflammation from injury, etc. and foreign invaders like bites from insects or other animals that have venom. They do this by serving as an alarm system when our body has been attacked, and mast cells release histamine and other important chemical mediators from inside the mast cell to help fight off the attack. They play an important part in wound healing as well as many other things. When you have a Mast Cell disorder, such as Mastocytosis or Mast Cell Activation Syndrome, you may have too many mast cells in your body, or the mast cells you have may not work properly. Even if you only have mastocytosis in your skin, for example, urticaria pigmentosa (also known now as maculopapular cutaneous mastocytosis), the chemical mediators that are released from those skin mast cells can make your feel sick in many other different places in your body, such has your stomach, head, muscles and bones, and just “all over”. This disease is not well understood yet, but we are learning more and more about it every day. New treatments are being discovered and tested all over the world to help make patients of all ages feel better while they have this disease.

UP is the most common a form of cutaneous Mastocytosis, but there are others, such as diffuse cutaneous mastocytosis (DCM) and solitary mastocytoma. UP lesions can erupt anywhere on the body where there are too many mast cells collected. They can look red to tan or brown in appearance and at times be blistered. There are many things that can trigger the spots to “flare” or become blistered or irritated – everything from weather and temperature changes, different foods, types of clothing, medications, friction on the spots themselves, and many other things depending on the individual. Some children can be literally covered head to toe in spots, but it is important to note that this is NOT a contagious disease. Children with diffuse cutaneous mastocytosis may have lots of blisters and lesions. Those with a solitary mastocytoma may have just a single lesion, and if it is in an area covered by clothing, no one may even know it is there. Children and individuals’ skin lesions often have to deal with a lot of discrimination based on their physical appearance. Typically this disease presents its self during infancy or early childhood.  Some children will outgrow it by the time they hit puberty or early adulthood, but some individuals never outgrow UP.  Although there is no cure, there are many available treatments to deal with the skin symptoms and other symptoms that the mast cell mediators cause in the body.

  • Here is a great explanation of Pediatric Mastocytosis, which can include UP, from the MastoKids site.
  • VIDEO: A mama of a little one with UP made this video to help her family and friends understand what her little one goes through a bit more, you can view it by clicking on the link.

The Mastocytosis Society, Inc. (TMS) is working hard on funding research to further understand these complex disorders(s) and they also work hard to support families and individuals that suffer from the many forms that Mast Cell Disorders can present. The new TMS website has a great children’s section!

To learn more about their work and how you can help, you can visit HERE.

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