It’s not contagious, only his smile is. “Oh, look at him, does he have chickenpox?”, they whisper around Aydan. Other mothers glance at him as they try to draw their child away him. Aydan suffers from a rare disease called mastocytosis. The cause is unknown and there is no cure.

A rare Illness

Aydan, on the images, was diagnosed with mastocytosis from a skin biopsy at 16 weeks old after spots started covering his little body at an amazingly fast rate when he was only 10 weeks old. Although this disease impacts on his daily life, he does not let it hold him back, he is a happy little chappy who endears all who meet him.

Mastocytosis is NOT contagious and affects one in every 2000 people. The condition means the body produces too many ‘mast’ cells, rare blood cells formed in the bone marrow that gather in the body’s tissues. These cells are vital to aid in fighting off illness and infection. But because affected persons have too many the body sends an alert of a threat to the immune system. Thus all those mast cells degranulate and release chemicals, including histamine, which causes allergic-type symptoms.

Mastocytosis can be broken into two major categories:

  • Systemic Mastocytosis in which bone marrow has been infiltrated with mast cells. (Often found in adults)
  • Cutaneous Mastocytosis in which the skin is infiltrated with mast cells. (Often found in children)

Living with Mastocytosis

Usually affected persons are covered from head to toe with brown/red lesions and tumours of clusters of mast cells under the skin. During their reactions they suffer headaches, crippling bone & muscle pain, sickness, diarrhoea, hives, blistering of the lesions, itching, flushing, fever, fatigue, mood changes or irritability. Everyone reacts differently. Hypertension, difficulty in breathing and anaphylaxis are also possible symptoms. Anaphylaxis is the most dangerous of all allergic-type reactions, and can be fatal.

Everyday occurrences such as changes in temperature, emotional stress, infection or fever can cause a reaction. As well as by medication, foods, toxins, insect bites, alcohol, dyes, preservatives, scents or chemicals. Triggers vary. They can change with anything as simple as the change in barometric pressure or pollen count for the day. Thus, many avoid high histamine foods as the mast cell produces a large amount of histamine. It is important to recognize and avoid triggers of mast-cell release.

In Search of a Cure

Although at present there is no cure, research into the disease and finding a cure is now underway. And it is proving very fruitful. But until a cure is found affected persons first of all rely on treatments for the symptoms that help improve the quality of life. Such as antihistamines (mast cell stabilizers), sodium cromolyn and topical creams. An epinephrine pen is often prescribed for use during anaphylactic shock.

The Instituto de Estudios de Mastocitosis in Toledo, Madrid, is the only hospital unit dedicated to research for masto in the world and has a small team that is stretched to breaking point. Dra. Almudena Matito has found medical treatments that have enabled many kids to now live an almost normal life. Playing with friends and going to school. But more research is still needed.

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The quality of life of sufferers of mastocytosis greatly relies on society and those in their inner circle. They need compassion, acceptance and funds for research to find a cure for all masto warriors. Remember: only their smile is contagious!

Written by Gemma Robinson-Miller, photos by Pernilla Danielsson.

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