ONCE UPON A GENE - Episode 079 - Creating Space for Mental Health for Men Living with Rare Diseases with David Ross
David Ross is a patient advocate, passionate about mental health and creating space for males experiencing mental health struggles. His activism began in 2017 when he was diagnosed with a rare disease called cowden syndrome. He became dedicated to raising awareness and helping to support others impacted by cowden syndrome.
EPISODE HIGHLIGHTS
When were you introduced to the rare disease world?
I was diagnosed with my rare disease, cowden syndrome, about three and a half years ago and it's been a roller coaster journey learning about my condition, managing my health and the impact on my family life.
How did your diagnosis impact your family life?
It started with a letter from my mother that she had been diagnosed with the same condition about a year before she passed away. The letter was for me to provide to my primary doctor with information for getting tested. At the time, I didn't know what to do with the letter and I was too busy living my life and too scared to deal with the possible consequences of the letter because I could see the impact it had on my mother's health. After she passed away, I decided to get tested and was found to have the same condition. The genetics counselor talked me through the process for getting tested and we talked about my daughter also needing to be tested. It was a difficult decision to put her through that at age 11. She was found to not be a carrier of the condition, which was a relief. Then I faced what to do, how my condition would impact me, my wife and daughter.
How did you get started on your mental health and advocacy journey after your diagnosis?
I moved quickly because I needed to know more about my condition and connect with other patients. That quickly turned into supporting others. It was too late for my mother, but I wanted to do what I could for others and offer support where I could around their health. I was involved in a clinical trial at Boston Children's Hospital, and the opportunity made me feel like I was making a difference and helped my family connect with other families.
How do you feel like you're making a difference in the rare disease community?
I've looked for opportunities that I can do from home, setting up international Zoom calls for male patients and caregivers because there are a lot of fantastic female advocates, but there don't seem to be as many male advocates, parents or patients talking about rare disease and how it impacts their mental health. It's been good to do that and learn from other guys speaking about their health and speak about what I'm going through.
What support have you found to be helpful along the way?
After my mother passed away, I went to a bereavement support group and it was full of older people and mostly women. It felt like there was no connection with the people in the group, but it was a learning curve because I gained a lot talking to people about their losses. It made me feel lucky for my loss compared to others and helped me to look at the positive. There have also been supportive rare disease friends who get what I'm saying and offer knowledge and guidance.
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