Join us as we start a brand new series, Patient-Doctor Perspectives, where we explore a diagnosis from the view of a patient and doctor. In this episode, we speak to Ashley Cámara, a Myelodysplastic Syndromes (MDS) survivor and advocate and Dr. Lucy Godley from The University of Chicago Medicine. Ashley shares her story of having two MDS diagnoses in her family – first her brother and then herself. Dr. Godley then delves deeper into inherited myeloid malignancies and how genetic links may lead to preventative treatment options.
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CLICK HERE to participate in our episode survey.Mentioned on this episode:
- Myelodysplastic Sydromes (MDS)
- Stem Cell Transplantation
- Hereditary Myeloid Malignancies – University of Chicago Medicine
- Dr. Lucy Godly Contact
- Young Adult Resources
Additional LLS Support Resources:
- Information Specialists
- Free telephone/web patient programs
- Free booklets
- Financial support
- Online chats
- Caregiver support
- LLS Community
- Support groups
- Patti Robinson Kaufmann First Connection ProgramFree Nutrition Consultations
Support for this episode provided by Taiho Oncology.
I am extremely interested in any genetic link with MDS as my mother, my sister and I have all had MDS. MY mother and sister both died. I have always told my sons that there was no genetic link because that is what I was told. This revelation is very concerning to me and I am VERY interested in pursuing any link between our cancers hereditarily and I want my sons to know the truth and what the outlook is.
Hi Wayne,
Thank you for sharing your story of MDS. Dr. Godley’s email is in the show notes. We highly recommend that you reach out, as you look to find if there is a genetic link with your sons.