 “What I quickly became aware of as I reached out for support and advocacy groups in the rare disease space, was that there were all these incredible female advocates—patients, mothers, caregivers—but there seemed to be hardly any guys in that space. Sadly, a lot of men tend to suffer in silence, because they’re afraid to share what they’re going through with others. There’s a fear of the societal stigma toward men who share the difficult challenges they’re going through. Even a sense of shame. As a result, men just aren’t being heard.” ~ Men's rare disease/mental health advocate, Dave Ross Dave Ross is a 49-year old British man (and father) living with a rare disease called Cowden Syndrome, which is inherited in an autosomal dominant pattern. This means that one copy of the altered gene in each cell is sufficient to cause the condition. Cowden is an inherited condition, occurring in roughly 1 out of every 200,000 people; Dave inherited the Cowden mutation from his mother, who sadly lost her life to the disease before she turned 60. You're probably wondering, 'What the heck is Cowden Syndrome?' According to the National Cancer Institute, people with Cowden syndrome have an increased risk of developing certain types of cancer, including melanoma and cancers of the breast, thyroid, endometrium, kidney, colon and rectum. People with Cowden usually have a large head (macrocephaly), benign tumors of the hair follicle (trichilemmomas) and white papules with a smooth surface in the mouth (papillomatous papules)—which usually start to appear by a patient's late 20s. For more about the disease, click here. Receiving the diagnosis of any rare disease, let alone a potentially painful and life-shortening one like Cowden, can be not only devastating and frightening, but it can also trigger a feeling of suffocating loneliness for those diagnosed (and their families). After all, the everyday people in our lives—despite meaning well and caring very much—simply can’t relate, empathize or ‘get it’ quite the same way as those in the exact (or at least quite similar) situation. And that’s why it’s so important for all of us that are traveling along a rare disease journey to find one another and come together, so that we don’t feel quite so alone. Dave insists that this is especially important for men, who are more likely than women to “suffer in silence.” Shortly after his diagnosis and early in the process of finding himself a rare-disease support community, Dave quickly became aware of the incredible number of courageous and outspoken women (moms, patients, etc.) doing the advocacy and public speaking about their rare disease journeys and all of the emotional and psychological messiness that comes with it. Dave felt that something was missing from these conversations—especially for the men—and he was determined to be part of fixing that problem. In many segments of our society—globally—it’s just not that acceptable and ‘manly’ for men to talk about this sort of scary and/or mushy stuff with other men. We are supposed to be strong and resilient and able to figure our own ways out of problems, not lean on others to help us deal with them. But it’s not just women or moms that need a safe and familiar place to share their journeys, thoughts, feelings and fears. Men and dads need that too. And sadly, too many men don’t have that. And as a result, we often feel “unseen” and misunderstood. In 2020, Dave took action. He created a men’s mental health awareness group to provide men like himself with that safe and inclusive place to feel a little less alone in their rare disease journeys. The group now meets on a bi-weekly basis via Zoom, which allows participants to tune in from countries all across the globe and hear from all different perspectives and points of view. Some of the men who attend the sessions are fathers, but not all of them. The one commonality, though, is that their lives are all affected by a rare disease that affects either themselves or a close family member. In our conversation, Dave mentioned to me that he is a big fan of podcasts, and he has a few favorites in the ‘rare disease’ genre that he recommends and wanted to share. The first is Once Upon a Gene, hosted by Effie Parks. Click here to check out the website. The other is Two Disabled Dudes—Life Beyond Circumstances (hosted by ‘the dudes’, Kyle Bryant and Sean Baumstark). To check that one out, click here. Below you’ll find a few highlight clips (1-2 minutes in length) from an interview I had with Dave in March 2024. Further below those clips you will find the full discussion (17 minutes in length). We touched upon a range of topics—everything from fear and loneliness, to masculine and cultural norms, to meaning-of-life stuff, and even soccer. I hope you enjoy the conversation as much as I did. "What I became quickly aware of was that there were so many amazing female advocates out there - whether it be patients or caregivers - all across the rare disease space. But there seemed to be hardly any guys raising awareness and talking about their rare diseases. And from conversations I began having with other men, it became clear to me that too many men are suffering in silence. And so I thought to myself, 'What is it I could do for our community to fill a need that nobody else was doing?' Then in 2020, I set up a men's support group, through Zoom. It's a safe place for men to share what's on their mind" - Rare disease and men's mental health advocate Dave Ross Ever since my son Connor was diagnosed with Sanfilippo Syndrome (aka Childhood Alzheimers) in 2019, I have been seeing a therapist pretty regularly to help me with my mental well being. And I've learned along the way that as I continue to mentally shed and remove those unwarranted layers of shame that I felt early on, it has made me feel a lot more free and open about talking about feelings and fears and other scary stuff like that" - Sanfilippo dad and Sanfilippo Project founder Mike Dobbyn We may all be from different countries, continents and cultures, but the truth is our commonalities far outweigh our differences. And we can all learn from one another" - Rare disease men's mental health advocate Dave Ross, on why it's important for men to seek support from other when when faced with challenges Click BELOW to see the full interview (16 minutes) with Dave Ross... We find out that we have a lot more in common than our differences. This has become a safe space for us to talk about what we’re going through, share our experiences, and create an environment in which we feel a little less alone in our journeys” - Dave Ross
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