Q. Is Mastocytosis contagious?

A. No. However, patients should not donate blood or any organs.

Q. Why are patients advised against donating blood or organs?

A. Medical research has not determined conclusively that is safe to do so. Until they know for sure, some physicians have advised patients against donating blood or organs.

Q. Are these inherited disorders?

A. There are some familial cases of Mastocytosis and related mast cell disorders. More commonly, within a family, members may have different disorders which are all impacted or worsened by irregular mast cell activity. Research has found a genetic component to Mastocytosis in some patients (not all) but has not determined definitively how these disorders are initiated. It is expected that with genetic research, more genetic markers may be identified.

Q. Does a Mastocytosis or mast cell disorder diagnosis mean I will suffer all the known symptoms?

A. Not necessarily. These disorders are so variable in presentation and activity per patient, it is difficult to predict what an individual patient will experience.

Q. If diagnosed with a cutaneous form of Mastocytosis, does that mean it will not progress to Systemic Mastocytosis?

A. Hopefully. However, there are many patients who have both cutaneous and systemic forms of Mastocytosis.

Q. Do pediatric forms of Mastocytosis resolve during puberty?

A. To date, medical research indicates yes for an estimated 50% of pediatric cases. However, there are some adults with Mastocytosis who also had the disorder in their childhood.

Q. Is Mastocytosis considered to be a form of cancer? Or is the risk of developing cancer greater with
Mastocytosis and other mast cell disorders?

A. Cutaneous and Indolent forms of Mastocytosis, and mast cell activation disorders, are not cancer. Some aggressive forms of Mastocytosis and mast cell leukemia do involve types of cancer. In most cases, Mastocytosis does not equal cancer.

However, this is a neoplastic disorder which refers to the abnormal proliferation of cells. Cancer is also classified as neoplastic. The difference is that cancer cells are malignant. Mast cells are actually good immune system cells but in the case of Mastocytosis and other mast cell disorders, the mast cells may be elevated in numbers and/or behaving abnormally.

Q. Does systemic involvement mean death is imminent?

A. Mostly, no. For cutaneous and indolent forms of Mastocytosis, patients should have a normal life expectancy. However, those who experience anaphylaxis and other life threatening symptoms or complications, and those who have tested positively for bone marrow involvement, are at greatest risk.

Q. Is there a chance that my Mastocytosis/mast cell disorder will go into remission?

A. Childhood forms of Mastocytosis often will go into remission as the child ages but in most cases the adult form does not.

People often feel very overwhelmed when they first receive a diagnosis.  Here are a few guidelines which may help put things into perspective and allow you to actively take control of your health. 

Education is Key:  Read and learn as much as you can about your diagnosis.  Knowledge is power, but be careful not to dwell on the worst case scenario.  Most people with mast cell disease lead very fulfilling lives once they learn to control their illness.  

Diagnosis is Just the Beginning:  After diagnosis, it will take time for your treatment protocol to take effect.  This treatment protocol may have to be changed and tweaked a number of times before you see improvements to your health.

You may need to see other specialists before you understand the full extent of your diagnosis.  Many physicians have never heard of mast cell disease or have very little experience with it.  You will need to learn to be patient as it will take time for all aspects of your diagnosis and treatment to come together.

It Starts With You:  You have a very large role to play in the management of your health.  You will need to learn your triggers and symptoms and manage them accordingly.  Your diet and exercise may change.  There will be many changes, but most can be managed quite easily.  Your symptoms may change frequently, sometimes even daily.  Food, exercise and enviornmental factors you've tolerated in the past may cause symptoms today.  You will need to become very in tune with your body and carefully manage your environment.  This is a life long commitment - you will have to actively manage your disease throughout your life.  

Find Support:  Seek the support of others and lean on others for support.

Seek a physician in your region who has experience with mast cell disease.  MSC keeps a list of physicians whom other patients have reported were helpful in their care.  

Preparing for your doctor’s appointment can be as important as getting the appointment itself.  Here are a few tips to prepare yourself for that visit:

• Advocate:  Become your own advocate for your health and well-being.
• Write it Down:  Monitor your health and record your symptoms (every day if necessary).  You may forget certain things when you present at your Doctor's office or the Emergency Room. Having a record of your symptoms may help outline what you have been dealing with. 
• Triggers:  Try to establish what your triggers are.  When your health changes, no matter what degree, record:
  • where you were
  • what you were doing at the time
  • what did you eat/drink
  • what were you exposed to (i.e. fragrances, chemicals)
  • were you under any stress
  • was it too hot or cold
• Symptoms:  Monitor your symptoms including type and duraction.
  • were you short of breath
  • did your GI tract react
  • were you itchy  
  • did your skin react
  did you feel depressed
  • did your heart rate increase or decrease
• Prepare Questions in Advance:  Be prepared with a list of questions in advance of your doctor's visit.
• Have Patience:  Remember that any illness takes time to diagnosis. This  is a rare disease and caregivers may not be familiar with this disease.
  • If you feel ill and your body is telling to seek care, listen and get care.
  • If you need to rest, REST.
  • If you need to talk, talk to a family member or friend.
  • If you think you are not being heard, advocate to be heard.

If your physician agrees that Mast Cell disease may be a possibility, feel free to reach out to MSC to find a specialist in your area that is knowledgeable about diagnosis and treatment.