Does MCAS Run In Familes? The Bonn Study Says Yes


The Disease / Monday, February 6th, 2017 / no comments

This is a question I get often and I always answer it honestly: it does in mine!

Myself and our adult son have been diagnosed with MCAD and we believe that it runs through my maternal line. Now that I know what it is, I can look at the long list of diseases and health complaints my mother, brothers, sisters, aunts, uncles, cousins and grandparents had and also my son and I have/had and see that mast cell dysfunction could easily be at the root of many of them, if not all of them.

It kills me to know I passed it down to my own child. Unfortunately I see many subtle signs of it in my other two children, too, and that scares me for them and for their future children, if they choose to have them.

This disease can manifest differently in each person so it’s easy to not notice a pattern. For instance, my oldest brother acquired a mystery disease that left him bedridden and gave him severe osteoporosis and COPD in his 40’s (both are seen in MCAD and he now has severe dementia in his 50’s, also seen in MCAD). He has since been diagnosed with mastocytosis.

I’ve been tested and in my 40’s I have strong, healthy bones, thank goodness. I was sick from birth with a cascade of allergic and inflammatory symptoms and diseases, though, including anemia, seizures, IBS, endometriosis, allergic rhinitis, sinusitis and gingivitis.

I would have never guessed my endometriosis and his osteoporosis would ever have a common cause! But mast cell disease explains it all.

So it’s frightening to think this runs in families, but ask yourself:

  • Do you and your children sneeze/cough/wheeze a lot for random or hard to pin-down “allergies”? Have “hay fever” all year long that doesn’t seem to respond to allergy medicines??
  • Do you and your children have a lot of infections (sties, ear infections, bladder infections, etc.)?
  • Do you and your children get hives easily? React badly to bee or wasp stings?
  • Do you and your kids get bad GI or delayed allergic reactions to foods yet test negative for food allergies? Do you have to avoid foods that are fermented? Can’t eat wheat but test negative for celiac?

These could be signs of familial mast cell dysfunction. Of course this is just my own experience with this disease. I know it definitely runs in my own family and these are just a few of our symptoms.

As always, if you believe you (or your children) may have mast cell or any other disease see a doctor right away, preferably an immunologist who graduated recently as they are most likely to have studied MCAS!

Interestingly, the experts used to believe that it didn’t run in families and the research said that it’s not heritable:

Most cases of mastocytosis are not inherited. The change (mutation) in the KIT gene that causes many cases of mastocytosis is typically a somatic mutation. Somatic mutations occur after the egg and sperm join (conception) and are only present in certain cells of the body. Typically, affected cells do not include the egg and sperm (germ cells). Therefore, the genetic change associated with mastocytosis typically only occurs in one person in a family, and the disease is not passed on to the next generation.

However, there is a more recent study out that answers pretty definitively the question on the familial occurrence of mast cell disease. It’s from the scientists at Bonn. Here’s a quick synopsis:

One-hundred-and-twenty-four patients ( =  index patients), who presented to our Bonn Interdisciplinary Research Group for Systemic Mast Cell Diseases between May, 2005, and November, 2011, for diagnostic reasons, were asked to participate in this study and 84 index patients with MCAD (MCAS n = 69, SM n = 15) agreed.

Approximately 74% of our index patients had at least one first-degree relative with systemic MCAD, regardless of systemic MCAD subtype and gender.

So there you go. We’re definitely one of those families.

Is yours?

 

Mother. Wife. Patient. Keeper of Huskies. MCAS blogger & advocate. Living life in the mast lane with the Grand Tetons & Yellowstone as my backyard. You can also find me blogging at Life In The Mast Lane and The Empty Nest Housewife.

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