Mastocytosis – you don’t want this!

Mastocytosis is a very rare disorder that can affect both children and adults. It’s caused by the presence of too many mast cells in various organs in a person’s body. When too many mast cells exist and undergo degranulation, the additional production of histamine can cause a number of symptoms which can vary over time and can range in intensity from mild to severe.

A mast cell (or mastocyte) is a resident cell of several types of tissues and contains many granules rich in histamine and heparin. Although best known for their role in allergy and anaphylaxis, mast cells play an important protective role as well, being intimately involved in wound healing and the defence against pathogens. When mast cells go wrong, or are present in far too high numbers, anaphylaxis can be triggered. Something goes wrong in the body and it wrongly detects certain food types as pathogens and so begins the fight to heal the body. However, since the food is just food, it fights the body itself and anaphylaxis is the result.

Symtoms of mastocytosis can range from skin lesions, bone pain in the skeletal frame, weight loss, diarrhea, nausea/vomiting, abdominal cramp and anaphylactic reactions to name just a few. Because mast cells play a role in allergic reactions, the symptoms of mastocytosis are often similar to the symptoms of an allergic reaction. An attack can be triggered by a certain food type, just like an allergy, and people with mastocytosis carry an EpiPen just as those with life threatening allergies do.

I met Beth recently at the NASG parliamentary reception this month. She, like me, didn’t look like she suffered from any allergies, but hidden beneath she has a condition much worse than anaphylaxis to certain foods. She can have an anaphylactic attack at any time. She often doesn’t know what causes the attacks but they can be triggered by food, exercise or stress. I asked one of the medical experts who was there at the reception what mastocytosis was and how common it was and her words were, “You don’t want Mastocytosis!” She’s right! I don’t! Luckily it’s very rare but for Beth coping with this rare condition is part of her daily life.

If you want to see what an an anaphylactic attack looks like watch this video on YouTube. It shows Beth as paramedics race to her rescue when she had a life threatening reaction recently.

Anapylactic attacks can happen very quickly and fast action is vital. Beth recovered fully after this anapylactic attack but it was a frightening experience. For her this kind of attack can be a regular occurence which can often be controlled by administering an Epipen, but this time she needed extra medical treatment.

Stay safe and remember to always have your EpiPen with you at all times if you have allergies.
When I have an anaphylactic attack my throat swells so much that I can’t even speak and my face, eyes and neck also swell up to monstrous proportions. I hope I never have another anaphylactic attack but the chances are I’ll let my guard down one day and I will have another one. I just hope I’ve got my Epipen to hand and a phone to call 999. Maybe it would be interesting if someone took some photos and videoed it. It’s not something that crosses your mind at the time but not many people have seen a real anaphylactic attack. Recognising when someone is having one and acting fast would be a useful lesson for everyone.

Special thanks to Beth for allowing me to post this video on my blog. I’d never heard of mastocytosis before I met Beth. It’s just another disease that doctors don’t understand. Noone knows why people have it and what can trigger it. It’s worrying that these kinds of illnesses are on the rise. However with careful planning and strong willpower attacks can be avoided by most allergy sufferers.

What did you think of this video? I thought it was very powerful. I’d love to hear what you thought.