Wednesday, May 11, 2016

Why I'm Speaking Out

I was recently looking on the website of the local medical school and was caught off guard. I don't expect most doctors to be familiar with mast cell disease. It's still not well understood and while it is likely to be under diagnosed, can still be considered a rare disease. We had to travel to Minnesota to get a diagnosis. I understand that it is not a commonly seen condition.

Somehow, though, I think I still held onto the belief in the back of my mind that in 5, 10 years, that would change. In another decade, more and more research would come out about mast cell mechanisms and treatment would be more straightforward and targeted based on specific symptom patterns. At least I was hoping...

But when I was looking at the medical school academic departments, I had a moment where I felt my hope in the medical community begin to crumble (yet again...). There were 17 major academic departments and course work tracts that all the medical students (i.e. future doctors) had to go through. Allergy was not one of them...Immunology was not one of them...Hematology was not one of them...

While I'm sure that all the students do have to take course work that covers allergy, immunology, and hematology, the fact that NONE of the possible categories that mast cell disease could be classified in has a focused multi-course plan of study is not encouraging for future research.

Right now, mast cell diseases are so poorly understood that doctors cannot even agree how to classify them. Are they solely allergic reactions and should be treated by an allergist? The lack of IgE mediated pathways would indicate that they are not, however, the resolution of symptoms with the use of an epi pen and the known involvement of mast cells in allergies would argue that they might be... Maybe they are immunological and should be treated as immune conditions? Except mast cell activity doesn't necessarily follow familiar immune pathways and are not specifically responsible for keeping the body safe from foreign invasions, but at the same time, many patients see considerable improvement with immunological treatments such as Xolair which targets these immune pathways...Should they be lumped into hematology and considered a blood disorder? Mast cells are produced in the bone marrow and some forms are characterized by the over production of mast cells by the marrow, yet other forms have nothing to do with over production in the blood itself and instead involve mast cell hyperactivity at the organ locations throughout the body...See how this is confusing??

If doctors now cannot agree on how to even categorize these conditions, and the future of the medical community spends a semester at most for each allergy, immunology, and hematology, how can I begin to hope that research will progress toward better treatments? It seems that without more education of the medical professionals, the only hope that we may have in the next decade is to get a better classification system of these conditions.

The specialists in this field are doing research, but how long can we (the mast cell community) expect them to continue to pursue new research? These doctors that invest in our care are not just doctors of rare disease patients. They are fathers, mothers, husbands, wives. They have families and more to go home to at the end of each very long day than just journal articles and research data. How long can we expect them to sacrifice their lives for ours? They sacrifice time with family and friends to collect research data in hopes of finding a breakthrough in a little understood field and hoping for answers before their funding runs out.

These doctors are our lifeline in a medical community that does not understand us. What are we going to do when these doctors are no longer practicing? If the future of mast cell patients is based on the current medical students, then we need to speak up and raise awareness NOW. I don't want to be in the same place in 10 years that I am in now. I don't want future generations of mast cell patients to have to go through an 8 year journey to a diagnosis because mast cell disease is still not understood any better than it is now. I understand that just because people know about something doesn't necessarily mean we will have a cure or even better treatment options. But I do know that if people aren't aware of mast cell diseases, then there is definitely no advancement in this area of medicine.

To be honest, I don't know what I can do. I don't know that there really is much that I CAN do. But I do know, that I have to do SOMETHING. If all that I can do is to speak up about living with mast cell disease, then that's what I'll do. If me being open about my life with mast cell disease means that one person gets an earlier diagnosis or some medical student remembers hearing my story 7 years later when they get a patient with weird, unexplained symptoms, then I'm not going to stop sharing.

I wouldn't have chosen this as how I wanted my life to go. But I didn't get that choice. I DO however, get the choice of how I am going to respond. I'm going to share my journey with mast cell disease so that hopefully others don't go through the years of misdiagnosis and frustration that my family dealt with.

Here's how you, family and friends, can help. Please share with medical professionals, students, insurance companies, anyone in the medical field. This is really the front line for getting awareness for these conditions. As knowledge and understanding spreads throughout the medical community, living with these conditions will become less of a battle and hopefully more manageable.

I don't want the next generation of mast cell patients to have to struggle through the same challenges I have. Eight years until a diagnosis is WAY too long. Years until an actual effective treatment is identified is UNACCEPTABLE. I know I can't change the medical community overnight, but if we don't start speaking up now, it's that much longer until change does happen. 

Those of us living with mast cell diseases are not sharing our lives because we want to but more because we HAVE to. If we're not willing to speak up about living with these conditions, who is going to? Here's what mast cell disease patients have to say about why we're sharing our lives with mast cell disease:

I'm speaking out about mast cell disease so that the medical community begins to recognize the disease and believe patients, and so patients can finally receive much needed treatments.
  • Deanna from Ohio living with malignant idiopathic anaphylaxis, mast cell activation syndrome, idiopathic angioedema and urticaria
I'm speaking out about mast cell disease so people will understand that even though I am not technically allergic to anything, normal "healthy" foods stand a good chance of sending me into shock.
  • Kathy from Oklahoma living with mast cell activation syndrome
I'm speaking out about mast cell disease so that I can heighten awareness for those whose suffering is undiagnosed.
  • Melissa from Minnesota living with mast cell activation syndrome
I'm speaking out about mast cell disease so that no one suffers in silence.
  • Rena from New Jersey living with mast cell activation syndrome
I'm speaking out about mast cell disease so that others don't have to wait 6 years for a diagnosis.
  • Emberley from Ohio living with dermographia and suspected mastocytosis
I'm speaking out about mast cell disease so that people can understand how this invisible illness has changed the lives of the people that have it and hopefully understand the disease one day.
  • Lisa from New York living with mast cell activation syndrome
I'm speaking out about mast cell disease because I want to be around for my daughter. With the little research and funding we have, there are not enough informed medical professionals to treat this illness nor its symptoms. In the meantime, I am afraid my daughter will not have her mommy around as long as necessary.
  • Angela from Colorado living with systemic mastocytosis
I'm speaking out about mast cell disease so that maybe one day, I or anyone else won't be told "there's nothing wrong with you" or "it's all in your head" and that maybe, just maybe, insurance companies will NOT deny the medicine we need because they don't understand how very much we DO need the medicine. Also, so the FDA would get on board and approve drugs such as compounded ketotifen.
  • Maureen from New Jersey living with systemic mast cell activation disease
I'm speaking out about mast cell disease with the hope that funding, education, and research will increase. I hope that one day, I will not struggle with the unpredictability and invisible symptoms daily.
  • Alison from North Dakota living with urticaria pigmentosa and systematic mastocytosis
I'm speaking out about mast cell diseases so that more research will be undertaken to identify the bio-markers associated with these conditions, which, in turn, will shorten the time it takes for patients to be diagnosed.
  • Anonymous
I'm speaking out about mast cell diseases for research, education for the medical world as well as educating our communities to raise awareness, funding to help families, and ultimately find a cure for our children and adults around the world.
  • Lisa on behalf of her daughter who was diagnosed at 13 years old
I'm speaking out about mast cell disease so others will know that they're not alone.
  • Anonymous
I'm speaking out about mast cell disease in hopes that doctors and family members will understand that we did not choose this disease, we did not choose to be sick, and we suffer greatly every day. To doctors: we are human beings with feelings not just lab specimens. We are sick people, not criminals.
  • Anonymous
I'm speaking out about mast cell disease because I have lost faith with western medicine, and I really believe that mast cell patients know more about this disease than most medical practitioners.
  • Elaine
I'm speaking out about mast cell disease so that others will not have to suffer a lifetime with a long list of unexplained symptoms. It is painful to be told that there is no medical reason behind your symptoms.
  • Lori
I'm speaking out about mast cell disease to let others know YOU ARE NOT ALONE AND YOU ARE NOT CRAZY!
  • Michelle from Oregon living with TMEP
I'm speaking out about mast cell disease so that people know what it is and don't just shrug it off in emergencies.
  • Anonymous
I'm speaking out about mast cell disease to raise awareness so that no one has to fight this disease alone.
  • Abigail from South Carolina living with mast cell activation syndrome
I'm speaking out about mast cell disease in hopes to make enough people aware including the medical profession that just because we don't fit what you learned in a textbook, doesn't mean it doesn't exist.
  • Rose from Missouri living with mast cell activation disorder

We don't fit in textbooks right now, but that doesn't mean we don't exist. Textbooks are rewritten every year, sometimes just so students have to buy the new edition. Maybe with us speaking out, one day, those new editions will include more extensive mast cell disease information that will lead to a better understanding within the medical community, shorter time to diagnosis, and ultimately more effective treatments or even cures.

I'm speaking out about mast cell disease because while I didn't get to choose whether or not I would GET mast cell disease, I can choose HOW I will live with it. For me, that means sharing my story in hopes that it helps at least one person either to a diagnosis, encouragement during a rough period in living with this condition, or just giving hope that they are not alone. Regardless of the reason, I'm speaking out.

We're speaking out.

No comments:

Post a Comment