I just recently arrived back home from attending a patient advisory board for a pharmaceutical company specializing in the treatment of indolent systemic mastocytosis (SM). The purpose was to provide firsthand insights from patients and caregivers that can inform product development, clinical trial design, patient support programs and overall patient engagement strategies. Together, we as patient advisors served as a crucial link between patients and the pharmaceutical company.
It was a wonderful experience being heard. I would recommend attending one if the chance ever comes your way.
Meeting others with SM for the first time
As excited as I was to help do my part as a patient advocate, meeting someone who has ISM like me was what I looked forward to the most. The last 25 years living diagnosed with this rare disease, I have never met anyone else with it.
My expectations were met — and exceeded. We were there all day, either in one large group or in smaller breakout groups. The day was interactive and required lots of participation. I left there with new friends and found that even though we had the same disease, our experiences differed greatly.
Some were diagnosed quickly but for others it took years, like me. There were a few of us that had our symptoms under control, while others were still struggling.
We were divided up into groups based on how we were being treated today. Some, like me, visited a Center of Excellence for care from a hematologist/oncologist specializing in ISM, while others were treated by their primary health doctor, allergist or even just a PA.
Despite the differences, I noticed one character trait we all shared, and that was strength. The second character trait we all seemed to share was hope.
Hope and strength are both so important when you are battling a rare disease. You need the strength to keep going and hope for a better future and treatment options to become available.
Feeling seen, and heard
Travel is harder on some patients than others. My symptoms are relatively controlled, so other than the fatigue associated with travel I don’t have to worry about triggers like someone who could face the possibility of a full-blown flare while away from home. To ease the possibility of any of us being triggered while attending the advisory board, the organizers took steps for prevention.
First when we arrived at the hotel, we were given a box filled with shampoo, conditioner, deodorant and lotion. These products were for sensitive skin with absolutely no smell. We were asked not to dry the clothes we would be wearing that day with fabric softener. The food that was served and available throughout the day was based on a low-histamine diet.
The precautions they took for our environment to be safe so that our time there could be beneficial was noted. I appreciate every effort taken.
I left there feeling the contributions that we as patients made were heard, and would be used for valuable research and treatment of ISM. We did our part to help others. To each of you that took the risk to travel to this advisory board: You are awesome.
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