We can be the vehicles of our own message by sharing our experiences with mast cell disease with researchers and healthcare professionals in the biotech world!

On Rare Disease Day February 2017, we were honored to be invited to speak at Blueprint Medicines in Cambridge, MA to help employees and researchers there learn more about Mastocytosis.  Blueprint Medicines has developed a drug for people with ASM and are currently working on one that would target those with SM.  It is wonderful to have the chance to educate about Mastocytosis, and this was no exception, we were so grateful to give back to Blueprint in this way.

Gail spoke from the perspective of a patient with Systemic Mastocytosis, and Laura spoke from a different perspective as a caregiver of a child with the disease.  We shared in detail the emotions, fears and physical challenges we each face every day in living with the disease and in caring for someone who does.   The Blueprint employees asked many questions about our struggles, how and when we were first diagnosed, how we found information and care, how we learned to manage our disease with usual daily demands of work and family, and details about the kinds of medicines we used and why.  Our goal was to put a human face on the scientific work they do, and many employees seemed moved and re-motivated while hearing about the difficulties and frustrations our rare population faces.

As patients, we usually feel so helpless in this disease, but participating in an opportunity to share our experiences like this is very empowering because it feels like we are actually doing something about it, something to help fix it.  By the end of our visit we felt less like patients under a microscope and more like part of a team, working together towards a cure.  We would heartily encourage more patients to engage in sharing their experiences with research and pharmaceutical companies when given the chance.  We were so impressed with the warm welcome and sensitive care Blueprint Medicines took to protect our comfort and health during our visit, by the scope of the questions their researchers asked us, by their keen interest in learning as much as they could about the various life-challenges of this disease, and by the genuine compassion they showed for trying to help our Mastocytosis community.  There’s a lot of hope with folks like this working their labs off for us!

Laura Canina and Gail Barbera

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