Most people with mastocytosis have the milder forms, which have only skin signs and no other features. Even the forms that involve the rest of the body are usually mild, but there are severe forms, including a nasty type of Mast Cell Leukemia. There is currently no cure for Mastocytosis, but there are a number of medicines to help treat the symptoms. My son started out on a daily dose of anti-histamine. We had to diarise his food intake for possible triggers. Some medication can also trigger a reaction. All the lovely newborn soaps and lotions were something in the past for us. We had a few trips to the emergency room, especially where abdominal discomfort was concerned. We had to take him for blood tests twice a year to monitor his Tryptase level.
He is four years old now and doing well and our aim is to raise a confident little man! Some days are better than others. He does not tolerate heat very well. We are quite lucky as he does not have severe reactions. Our “go to” meds always seem to help. We don’t carry an Epi-pen anymore. Our doctor is positive that he will outgrow this by the time he is eight years old. He is attending school at the moment – we have had encounters of children teasing him. He knows he looks different and sometimes he will make a remark about it. In public he also does not go unnoticed. People stare and talk behind our backs. We were chased out of a play area once as another mom feared that her child would catch whatever my son has. We often get asked “does he have measles or chickenpox?” No! No! No! He does not have measles or chickenpox and it is NOT contagious. Spots Happen!
Through a HUGE amount of luck and a bit of help, thanks to social media, we have managed to find more families, within South Africa, with children with the same condition. We have started a WhatsApp group, Masto Moms, and we are a lifeline for one another; supporting one another and sharing advice. We don’t know what tomorrow is going to bring – but one thing we all have in common is that we love our children dearly. We stand together and pray for a cure for this condition so that our children can have “normal” lives.
But this is my story. There are thousands of masto children out there, each with their own daily struggle.
If you are reading this article – please go out and tell one other person about this rare disease. This way we are making others AWARE. 28 February 2019 is Rare Disease Day – I will be wearing my ribbon with pride. J
Note: patients do not need to feel alone when diagnosed with mastocytosis. Trained allergists have experience with this condition. You can see our website for a list of allergy- trained doctors.