This topic has become a pretty important one here at our home because our adult son is in the process of filing for disability now that he has his diagnosis.
Like me, he is doing much better since his diagnosis but he is still easily triggered and symptomatic almost every day, like me, so he doesn’t have much choice but to try to get some assistance until he gets a better handle on his symptoms.
I don’t want to jinx it so I won’t say anymore about that, but I do want to explore the answer to the question the title of this post poses.
Just how disabling is mast cell disease?
According to Wikipedia:
For most, symptoms wax and wane, but many can experience a general worsening trend over time. Lifespan for those with MCAS appears to be normal, but quality of life can range from mild discomfort to severely impaired. Some patients are impaired enough to be disabled and unable to work.
I can only speak from experience as a patient, and of course my experience isn’t going to be the same as the next person, but just from my own experience, research and seeing the devastating impact this disease has had on myself, my brother and my son, I can safely say that many of us are experiencing pretty severe levels of disability.
I’m not the only one to notice, either. In an article on another topic that I referenced last week, Priscilla Auyeng, a scientist at WEHI and immunologist at the Royal Melbourne Hospital, said:
“Studies show the impact on quality of life is as significant as it is for people with heart disease. Even doctors underestimate the impact it has on patients.”
Thank you for acknowledging this, Priscilla.
My oldest brother is bedridden with severe dementia, osteoporosis and COPD at just 53 — all most likely brought on by mast cell dysfunction. My son and I are prisoners in our own home, thanks to MCAS. Like him, I am not as limited physically as I was before my diagnosis but I still have to live in a very controlled environment to stay untriggered and it takes up what little energy we have just to get by, again, thanks to our MCAS.
This disease is very complex and managing it is very, very difficult due to the nature of the disease.
Many of my readers who have emailed me have shared that they, too, are severely disabled by this and many of them can’t work or do much more than just get by from day-to-day. Working or just going outside of our “safe bubbles” is far too triggering and we are simply unable to face a world of unknown variables (aka triggers) without risking furthering the deterioration of our already fragile immune system (aka health).
There are so many potential triggers it’s mindboggling. Triggers like; chemicals, pollen, fumes, stress, exertion and dozens more. It’s really impossible to avoid them all. Plus, who wants to be at work trying to deal with people and being expected to perform and give 110% when you feel like you’ve got a terrible head cold, a bad stomach flu and rolled around in poison ivy all at the same time?
So, to answer my own question, just how disabling is mast cell disease?