The Rare Disease Way
We spent Saturday morning celebrating Adelaide's birthday with her family, the first since she had passed. Ladybugs and smiles abound though I have found moments since blinking away tears knowing this shouldn’t have to be this way. I’m not sure I’ll ever make peace with those I love dying because we did not know what to do to keep them alive. Nor do I ever have a day go by without thinking about if I am doing enough to keep myself balanced as I wait for new treatments and cures.
This week I pieced together what was causing an ongoing issue and in doing so realized I probably didn’t even need the antibiotic I fought so hard to take in August. The last two months I have been trying to increase a daily medication which I now know seems to be causing more harm than good. It occurred to me Wednesday morning after a symptom returned yet again and I remembered this was the third time it coincided with the increased medication. After a quick google search I had figured it out. I put the pieces together and presented a case study to my doctor who agreed with my finding. My husband felt like we were on an episode of "House" and a friend said to me after I excitedly texted her my discovery -“but why did you have to figure this out- why didn't your internist know?” I responded, "It is the rare disease way."
My diseases impact so few people that they are barely taught in medical school so it should come as no surprise that the majority of practitioners in the world have never even heard of my conditions. And yet, these are the physicians who are supposed to care for me, in their offices, at the Emergency Room, in the operating room, or the ICU. In truth, most who have cared for me are learning about mast cell disease from me. This is the rare disease way.
But perhaps more concerning is that having a smaller physician population who understand and treat mast cell disease mean that you also have fewer minds asking why? Research moves understanding of diseases forward - it answers some questions but also allows us to ask new ones - until we understand why. Without research and advancement, lives will continue to be lost, far too soon, with no reason at all except they still did not know. Because sadly, that too is the rare disease way.
Tomorrow, Tuesday October 20th, is the 3rd Annual International Mastocytosis and Mast Cell Disease Awareness Day, a day dedicated to raising awareness about mast cell diseases, the patients who live with this disease daily and the practitioners who fight along side us. It is a day that I hope through awareness we can increase tolerance and understanding among others so that even in one small way we will move things forward. We so desperately need things to move forward.
I can say with certainty that since my Mom died we do know more now than we did when she was alive but I also know it is still not even close to enough. I still live with extreme challenges of my disease daily- never knowing what new trigger may upset my mast cells sending me spiraling into a reaction or anaphylaxis or when a treatment that worked today won’t tomorrow as was the case this week. My daily struggle will never end without more answers and needed research to advance knowledge of my diseases that too often are overlooked and forgotten.
I will never stop fighting my own battle but I know that alone will not bring about change which is why tomorrow, the International Awareness Day feels so important. I hope you will join me this year and use your voice for those who are no longer here to speak, for Adelaide, my Mom, and the many others who lost their lives this year. Please consider sharing my post or the infographic above, wear purple, or for those that would like to make a donation to help ensure continued research you can do so by clicking here. And know that in doing so you are joining thousands of people worldwide, fellow rare disease warriors, who are also raising awareness and funds giving us all hope for a brighter and healthier future. Because truly, this is the rare disease way.
