Parents as Rare - Cowden Syndrome and Male Mental Health

PARENTS AS RARE - EPISODE 043

Cowden Syndrome & Male Mental Health - David Ross

David Ross is a rare disease leader in men’s mental health. He plans and hosts valuable international support calls focused on men's mental health in the rare disease community. David is also a dad with a rare disease called Cowden Syndrome.

EPISODE HIGHLIGHTS

How did finding out about your disease shape your relationship with your daughter?

I felt I wasn't supportive enough to my mother when she was facing Cowden Syndrome. When I was diagnosed with the same condition after she passed, while I couldn't go back and change how I supported my mother, I could support others. Looking back, I focused a lot on advocacy and my mother’s legacy. I've shifted my focus in the last year to my daughter and myself. My daughter needs more support and we need more time for us, and our relationship has become better because I've recognized and acted on that.

When did men's mental health become a focus of your advocacy?

Someone brought to my attention that a lot of men in the rare disease community didn't seek support or speak out about what they were going through. As I searched for my voice in the rare disease community, I decided to set up international group meetings for men who need a platform to share what they're going through and get mental health support.

What was your experience opening up about your feelings, thoughts and struggles for the first time?

After my mother passed away and in wanting to make a difference for myself and others, I felt strongly that I needed to speak out about what I was going through and how I was impacted. It has taken time to learn how to speak up, what to say and what not to say. While it was scary, connecting with others in the community continues to help me and inspires me to get my story out.

What is your advice for other parents with a rare disease?

Feel the feelings. There are so many feelings and emotions that come with chronic illness and rare disease, and you need to give yourself permission to feel all of them when they arise. Sometimes writing down what you're going through can help to express your feelings.

RESOURCES MENTIONED

ONCE UPON A GENE - Episode 114 - The Bravery of the Brokenhearted - A Big Brothers Perspective on Grief From the Loss of a Sibling with Sanfilippo Syndrome with Noah Siedman

https://effieparks.com/podcast/episode-114-noah-siedman

Rare Revolution Magazine, Advice From Rare Dads: Top Tips for Rare Parents

https://rare-revolution-wp-images.s3.eu-west-1.amazonaws.com/wp-content/uploads/2021/10/19100033/Top-Tips-from-RARE-Dads-for-RARE-Parents-Final.pdf

Rare Disease Male Support Group

https://www.facebook.com/groups/991558431661517

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