Survivor and Advocate Meredith Cowden, MA, LPCC-S, Shares Insight and Resources Regarding Chronic Graft Versus Host Disease
Today, survivor and advocate Meredith Cowden talks about being your own advocate regarding GVHD. As patient advocacy director of the Meredith Cowden Foundation, she has a wealth of resources to share, many of which are linked below.
(If you'd like to hear a more detailed version of Meredith's story, you can listen to Season 6, Episode 4 of the Marrow Masters podcast here: https://marrowmasters.simplecast.com/episodes/meredithcowden )
After a diagnosis of AML, Meredith received an allogeneic bone marrow transplant from her sister in September of 2001. In October, she developed acute Graft vs. Host Disease, which later became chronic Graft vs. Host Disease. She talks about the frustrating, unpredictable nature of cGHVD, and how she began looking for resources. Unfortunately, Google was not very helpful. After some collaborative work, she presented a comprehensive list of resources at the 2020 NIH Patient Advocacy Summit. The list includes peer support groups, organization that can help with financial assistance, and more.
We've got her entire list on our website here: https://www.nbmtlink.org/wp-content/uploads/2022/06/cGVHD_Resouces_2020_NIH_Summit.pdf
Meredith talks about "spoon theory." You only have so many spoons for your day- she explains. Meredith also talks about the Meredith Cowden foundation, and their GVHD symposium series going on in 2022-2023.
There's a book that Meredith recommends, written about prednisone, from the perspective of a doctor and a patient. It's called Coping with Prednisone and you can find it here: https://www.amazon.com/Coping-Prednisone-Revised-Updated-Cortisone-Related/dp/0312375603
Meredith is now 20-years post transplant and recently turned 40. We spend some time discussing how she's been able to decipher which physical elements are related to GVHD versus just getting older - something she didn't think about at the time of her transplant.
We wrap up with more practical advice from Meredith. She talks about deciding what your priorities are. What's most important to you? That can help you set a routine and find balance in your life. And it's OK to say "no" to people sometimes. Finally, be your own best advocate. Don't be afraid to speak up with your doctors and be part of the conversation around medical care.
More Resources:
The Meredith A. Cowden Foundation: https://cowdenfoundation.org/
Spoonie Day App: https://www.spoonieday.com/
The National Bone Marrow Transplant Link's updated book on Graft vs. Host Disease: https://www.nbmtlink.org/product/graft-versus-host-disease/
National Bone Marrow Transplant Link - (800) LINK-BMT, or (800) 546-5268.
nbmtLINK Website: https://www.nbmtlink.org/
nbmtLINK Facebook Page: https://www.facebook.com/nbmtLINK
nbmtLINK YouTube Page can be found by clicking here.
Thank you to this season's sponsors:
Pharmacylics: https://www.pharmacyclics.com/
Janssen: https://www.janssen.com/
Kadmon: https://kadmon.com/
Sanofi: https://www.sanofi.com/