257 – David Ross of Little Hampton, England, A Rare Disease Advocate Reflects On His Cowden Syndrome Diagnosis

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.

David Ross: Give yourself time to adjust to a new diagnosis. I think it’s a lot to process and it’s gonna take time to get used to that and then adjust to that. I would also say it’s really important to not be too hard on yourself. Don’t expect to do too much at once, so don’t be too hard on yourself. I think that’s really important.

Tom Couch: That’s our guest this week, David Ross. A rare disease leader in men’s mental health, he plans and hosts valuable international support calls focused on men in the rare disease community. David also has a rare disease himself called Cowden syndrome. We’ll hear how he works, thinks and deals with his rare disease on this Special Fathers Network Dad to Dad Podcast. Say hello now to the founder of the Special Fathers Network and the host of the Dad to Dad Podcast, David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network. Please support the 21st Century Dads Foundation by contributing to Dads Honor Ride 2023, which is a 3,100-mile seven-day bicycle ride taking place from June 17th to the 24th, starting in Oceanside, California and ending in Annapolis, Maryland. I’m one of the four riders and would really appreciate your support. Please make a tax-deductible contribution by going to 21stCenturyDads.org.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. To find out more, go to 21stCenturyDads.org. And now let’s hear this discussion between two Davids, David Hirsch and David Ross.

David Hirsch: I’m thrilled to be talking today with David Ross of Little Hampton, England, a patient advocate at Rare Disease Male Mental Health Support Group, who himself has Cowden syndrome, a rare disease that increases the risk of getting certain cancers, benign growths, and is linked to autism as well as neurodevelopmental delays. David, thank you for taking the time to do a podcast interview for the Special Fathers Network.

David Ross: Thank you for inviting me.

David Hirsch: You and your wife, Sharon, have been married for 20 years and are the proud parents of Rachel, who is 17. Let’s start with some background. Where did you grow up? Tell me something about your family.

David Ross: Yeah. I grew up in a place called Tunbridge Wells in Kent. Family at that time, pretty much close together. Grandparents around. My mother had me when I was young. I never knew my real father. I never knew anything about him until my mum passed away in 2016. Shortly after, I found out some information about him. So I was always close to my grandparents, very much. And my aunt and uncle who were not much older than my mum. I think my aunt lived at home when I was born, so I had a big sister in her. Yeah, good times, really. And I definitely felt loved and supported looking back then.

David Hirsch: Excellent. Thanks for sharing and sorry about not knowing who your biological dad was, but…

David Ross: Yeah.

David Hirsch: …my recollection was that your mom remarried when you were quite young. And I’m wondering how did that transpire and what influence did your stepdad have on your life?

David Ross: Yes, my mother remarried when I was five. I can vaguely remember the wedding day or as a page boy. It all felt very good, very exciting. Family around at the time. Yeah he was a policeman. So we moved from Kent to Little Hampton and yeah, it felt kind of part of a proper family at that point in time. He struggled a bit when I was younger as a father. He never knew his real dad. He was there, he was determined, he was hardworking, and yeah, as our relationship grew over time when I got older, I developed a real strong bond with him I felt. Going fishing, talking about sport. Yeah, it was a good… Well, it became a good relationship. That’s how I describe it.

David Hirsch: Yeah. Thanks for sharing And I know that it must have been difficult at first, but I think maybe as we each mature, get older, we look at our parents from a different perspective.

David Ross: Yeah.

David Hirsch: Physically, like we’re getting to be closer to the same size that they are. And then your life’s experience helps put things in perspective, too. And maybe we’ve become a little less judgemental about things, I’d like to think.

David Ross: Yeah, definitely.

David Hirsch: Did you have any siblings when you were growing up?

David Ross: Yeah. My mother and my adoptive father, they had another child. And that was my sister Joanne, who was born just under five years after me. I remember as younger children, we were close, but I think as we became teenagers, slightly going different sets, separate paths, really. And she was different to me. She had different interests, different hobbies, and ever since then as we started to grow up, I don’t remember us ever being as close as we once were when we were small children.

David Hirsch: Thanks for sharing And I’m thinking about other men who might have played an influence. And I’m wondering if your stepdad’s dad or your mom’s dad had an influential role in your life.

David Ross: Yeah, very much my mother’s father played a big role in my life. I think having my mum remarry and having her dad was great. It was challenging at times. It benefited me in lots of ways as discussed, but I don’t know, it never felt quite the same as perhaps having a biological father maybe could never could replace that.

But my relationship with my grandfather, I would say was unique and special and I still felt, looking back overall, he has been that closest. He was very much involved in taking me out to places, museums, walks in the country, getting me interested in music. He was very much his own person, but he was always there.

Their relationship, especially after my mom passed away, was one of the best things I’ve ever had. It was tough, but I was his carer. Looking back I really now realize how much he taught me and how much an influence he’d been in my life. So yeah. Special to say the least.

David Hirsch: Yeah. Thanks for sharing. It sounds like it was a special relationship that you shared with him and that’s something we have in common, not only our first names, but the fact that our maternal grandfathers played an influential role in our lives.

David Ross: Yeah.

David Hirsch: And I think that’s a really important message for our listeners is that grandparents do play or can play a really influential role in their not only children’s but grandchildren’s lives. And you don’t know until maybe you look back afterwards, right? You can connect the dots looking back what an influence that they had. So I’m really pleased for you. So my recollection was that from an educational perspective you graduated from Sixth Village Academy. What is that?

David Ross: That’s a high school and I know the year of graduation is different to the US. Yeah. I graduated when I was 16. After that I went to music college, but I know my parents were splitting up then and I realized, yeah, as much as I would love it to be, I wasn’t gonna make any sort of career as a musician. Yeah, I dropped out of college and kind of a period of time really, I lost my way a bit and not in a negative way, but drifted a bit from job to job. I think looking back, it was I had no really… When something goes wrong, you don’t always know which way to turn. But yeah, that’s what happened after education.

David Hirsch: Thanks for sharing and being so open and authentic. My recollection was from a career standpoint, you spent the better part of nine years at Morrison’s…

David Ross: Yes.

David Hirsch: …as part of the sales floor team. So that gave you a lot of work experience and working with people and sales experience for that matter. And then for the last whatever number of years, you’ve been a rare patient advocate.

David Ross: Yes.

David Hirsch: You also had been involved with, or maybe still are, with an organization called EURORDIS, and I’m wondering what does EURORDIS do?

David Ross: Yeah, so EURORDIS is a rare disease organization. So there are about 7,000, I think are the latest count, different rare diseases. But some of these organizations are very small. So EURORDIS just gives them support to help their communities. It also fights for policies that will help people with disabilities, disadvantages. It’s very much, I would describe it as the political wing of rare diseases. It’s closely linked to the European Union, so it’s politics, rights, legislation, funding, and it’s like I would say how to make things happen in a real way. I think support groups are great and are really helpful, but sometimes you need more than support group. You need policies that will actually support and change people’s life of aspects a support group can’t.

David Hirsch: So EURORDIS. Is that combining like Europe and disability?

David Ross: Yes. Yes.

David Hirsch: Okay. Let’s include that in the show notes so that’ll make it easy as possible for somebody to learn a little bit more about that.

Let’s talk about special needs first from a father’s perspective and then from a personal perspective. So you had mentioned that Rachel is 17.

David Ross: Yes.

David Hirsch: And from one father to the next that’s a challenging age…

David Ross: Yeah.

David Hirsch: …to be a parent. I’m sure it’s even more challenging to be the teenager at times.

David Ross: Yeah. She doesn’t have a rare disease, which is great and we’re very relieved and feel very lucky that she doesn’t have one. She does talk about missing her grand, my mother who passed away to the same rare disease as me, and missing my nephew and one of my sister’s children, who passed away to a different rare disease. She has mentioned at times she does worry when I go for scans for my rare disease. I have to go for some scans every year or two. Yeah, she has are you okay dad? Is everything gonna be alright? So you need to have those conversations about what they’re about. And actually these scans are preventative and in some respects, you are really lucky to have those scans because they’re keeping on top of your health. But the main thing is we work through that. We talk through that, and it’s hard and we admit it’s not the same, but we look to building our relationship. I look to supporting her the best way I can as a father.

David Hirsch: Yeah. Thanks for sharing. Any challenges that you’ve experienced as a dad to an only child?

David Ross: There have been challenges. In fact, it’s hard for both of us in different ways. That’s obviously hard for her more as you just mentioned her being a teenager. But I think through those challenges I would say our relationship has got better because of it, being honest about the situation and having those conversations it’s helped us. I think I’ve become more over the past few years, become better at talking through emotions with her as a father, feelings, and having those conversations with someone that is almost 18, I think. I think that’s really important for her.

David Hirsch: Okay. Thank you. I know that there’s a lot of changes taking place in people’s lives when they’re teenagers. There’s the anxiety that goes along with what am I gonna do? Am I gonna go to school? Am I gonna go to work? How am I gonna support myself?

David Ross: Yeah.

David Hirsch: And there’s an expectation that you’re gonna be independent.

David Ross: Yeah.

David Hirsch: And be on your own. And some kids can’t wait, and other kids are like, I don’t wanna get out of bed.

David Ross: Yeah.

David Hirsch: I don’t wanna leave the nest. And occasionally we joke about the umbilical cord being stretched into their twenties or into their thirties. [laughing] And at some point in time, you have to be willing to cut the umbilical cord and move on.

David Ross: Yeah.

David Hirsch: Anyway thank you for sharing. So let’s talk about your own situation. I’m curious to know how did your diagnosis of Cowden syndrome come about? What age were you and what were the symptoms that might suggest that you had this?

David Ross: Yeah, so it came about through my mother about a year before she passed in around 2015. She gave me a letter, which basically was like the information that I needed to give to the doctor should I want to get tested. And at the time I was like, yeah, I’ve no obvious symptoms, everything is okay. As soon as she passed away, I felt, you know what? That letter that she gave to me was totally the right thing for her to do and almost felt, I don’t know really, to give her passing some sort of meaning I had to get tested. And I was found to have the condition, which it still wasn’t long after she went, I was still grieving. So it was like a lot of emotions to process and work through. But at that time I also wanted to get Rachel tested, which was an option to me. See if she had the condition or not, but I felt it was just something that had to be done. So I got her tested and was found out that she didn’t have the condition, which was great, which was a real relief. And then I could focus on coming to terms with the condition.

David Hirsch: Yeah. Thank you for sharing. So if I can paraphrase what you’ve said, Cowden syndrome is not something that you would know you would have unless a family member, like your mom in your case, would’ve passed some information along to you.

David Ross: Yeah.

David Hirsch: And you might not learn about this until you’re an adult. Cuz if I did the math correctly, if your mom is sharing this letter with you a year before she passed away, you were about 40 years old at the time.

David Ross: Yeah.

David Hirsch: If your mom was in declining health, you know you’re learning about her situation, obviously your mom passing’s gotta be a very emotional situation. Then getting tested yourself shortly thereafter, it rocks your world because now all of a sudden, you reflect on your own life expectancy and say jeez. How is this gonna impact me? How long am I gonna live? All those mental gymnastics that take place in somebody’s mind. So you weren’t diagnosed as a youth, you weren’t aware of the syndrome until you were an adult. So I’m wondering what are some of the challenges that you’ve experienced now knowing that you have this Cowden syndrome and how’s it affected your decision making?

David Ross: I think some of the challenges I’ve faced, I’ve been around taking care more of my health, not trying to do too much. I think it also impacts my relationship when my daughter has discussed being supportive to her, like in the way discussed earlier. It makes me more appreciative of what I have. The fact that I can still do certain things is great and I try and appreciate the good things I do have in my life. In a funny sort of way I used to worry or get stressed about stuff more, but now I don’t. I take things more by strides. Because it does take out a lot of energy out of you. Getting worked up about things, especially things that aren’t worth it. And yeah, so I save my energy to appreciate the great things I do have because you wanna keep your energy for challenges you may face with your health in the future.

David Hirsch: Yeah. Thanks for sharing. So what I heard you say is that there’s a higher emphasis on self-care, taking care of yourself.

David Ross: Yeah.

David Hirsch: Probably eating right, exercising, getting right amount of sleep, that type of thing, and being consistent about it. And it seems like it might have had a positive effect, at least from certain perspectives that maybe you appreciate things a little bit more and maybe don’t get stressed out over some of the little stuff that we all get stressed out over, just because. And it might have the impact of maybe bringing you closer with your daughter, right? Not that she’s fearful of losing you anytime soon, but just being able to talk about things. That’s something that I struggle with, I know that a lot of guys struggle with, is expressing their emotions.

David Ross: Yeah.

David Hirsch: For some reason it’s perceived at least outwardly as a sign of weakness if you have emotions. You don’t have to wear all your emotions on your sleeve and lead with everything you’re thinking or feeling, but I think particularly as a father and raising a daughter, women are more emotional creatures on average than men. And your ability to express yourself and be more empathetic and understanding is probably a really important trait to have.

David Ross: Yeah, definitely. Yeah.

David Hirsch: So are there any supporting organizations that come to mind either for individuals like yourself with Cowden syndrome or other rare diseases or mental health issues?

David Ross: Yeah. From my own rare disease organization, there is a charity in the UK called PTENUKI. Because P10, because of the this tumor suppressor gene problems, cancers, and issues with my condition. They’re really good. They’re making great guns supporting the community. Global Genes in the USA are great at looking at the human emotional impact of being impacted by rare diseases whether you be a patient or caregiver. All these organizations are doing great. And actually I think they’re doing, they’re not only doing great, they’re getting better at getting closer to patients, caregivers, and it’s important that they all stay focused with that, which they all seem to be doing great at that.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation each person, mom or dad who completes the survey will receive a Great Dad Coin. Thank you. Now, back to the conversation.

David Hirsch: I’m wondering what role spirituality has played in your life.

David Ross: I always have to say quite a bit really. Over the past few years, I think losing my nephew… Just losing someone younger than you was something I found really hard. I just felt lost at the time with that. Yeah. We all knew he wasn’t gonna live a long life, but we weren’t prepared for when the end came. I suppose other people aren’t. I think that’s made me like look into kind of meditating and listening to other people speak about their mental health struggles and having a better connection to yourself.

David Hirsch: Yeah. Outta curiosity, how old was your nephew when he passed?

David Ross: He was 22.

David Hirsch: Wow. That is really young.

David Ross: Yeah.

David Hirsch: And did you say that you knew that he wasn’t gonna have a long life expectancy? Did he have a condition or diagnosis himself?

David Ross: Yeah, he was diagnosed with his rare disease at six months and the prognosis at that time was like sometime in his twenties he would probably pass away. I know. Yeah. I think it’s that thing of, there’s just nothing you can do for people, loved ones. And that’s hard to sometimes accept. We don’t speak about it, my sister and me, because it is so painful and so hard and which is a shame in a way, but it’s just difficult and it’s forever. And yes, I think he’s with us in our hearts. It’s still not same as seeing him and being with him in person.

David Hirsch: So what was his name and what was his diagnosis?

David Ross: Yeah, his name was Ashley and his diagnosis was a rare disease called Pelizaeus-Merzbacher disease.

David Hirsch: Okay. I’m sad that he died at such a young age and that he had to struggle with whatever that disease and condition brought to his life. But every life is important and needs to be honored and…

David Ross: Yeah.

David Hirsch: …I’m hoping just by reflecting on your nephew and the role that he played and the fact that you had mentioned, while he might not be here physically, he is still in your hearts, right? He had an influence and an impact on your lives. And that maybe with time, the pain will be a little bit less and that you can put that experience into perspective.

David Ross: Yeah.

David Hirsch: So I’m thinking about advice now and I’m wondering what advice would you give to a dad, either one that’s raising a child with special needs, or if a dad finds himself in the same situation that you do. You’re the person with the rare disease or potential disability.

David Ross: I would say give yourself time to adjust to a new diagnosis. That’s really important. I think it’s a lot to process, a lot of possible change. And it’s gonna take time to get used to that and then adjust to that. I would also say it’s really important to not be too hard on yourself. I think respect, routine and normality is important, but don’t expect to do too much at once. So don’t be too hard on yourself. I think that’s really important. I also think talk to people. Start with your family first and also look for a support group and look for professional help if needed. Because I think talking about it is the only way you’re gonna make sense of it, understand it. This is real. It’s happening. I think it’s really important to talk to loved ones about it, and they may have concerns and worries about how you’re feeling, what you’re going through, and it’s not weak. It’s not a bad thing to express how you’re feeling and how any concerns. Because these things are things that we are going through. And I’ve actually found, like for me as a father, talking to my daughter about it has strengthened our relationship by our honesty.

And actually it’s about being stronger person, stronger people. And really I think that is how you do that really. When we’re talking through, we’re working through, that is a strong thing as a man, as a father to go through. And we are facing some big challenges here and it’s certainly not weak or vulnerable to bottle those up.

David Hirsch: Yeah I think those are words of wisdom. If I can paraphrase what you’ve said give yourself time to adjust. Don’t be too hard on yourself if you’re not able to do everything that you might have expected to be able to do. And then the importance of communication, not only with your family. And maybe seeking out support group or groups, but if you need help, you know that you’re not where you want to be, there are opportunities to get professional help.

David Ross: Yeah.

David Hirsch: Whether it’s counseling or a therapy of some type. So I think that’s really insightful. Is there anything you’d like to say before we wrap up?

David Ross: Yeah, I would just probably like to say really and I know obviously females go through problems and challenges. But speaking from that kind of perspective of being a man I think having a rare disease, whether that be a patient or caregiver, comes with many added layers. And it is a lot of challenges that potentially we are currently facing or have to face in the future. And certainty is part of life, but I think it’s more, again when you have to face these things.

And I think it’s really important to acknowledge as men, we have to be stronger and I think however you want to do it, I get it. Not everyone’s to join a support group. Not everyone feels they need professional help. But I think it’s important to talk through these issues with whoever you feel comfortable with. Because these are big things. Another thing I get and understand running my support group, I get it, guys are busy, guys have a lot going on. But also I think that’s another reason we need to make time for ourselves and our mental health as men. Whatever support you may need as discussed like professional support or friend or family member. So I think that’s important as well. That gets forgotten. I know we are busy as men and we have a lot going on, but we mustn’t forget or make some time for ourselves and for our emotional mental health challenges that we face.

David Hirsch: Yeah. Thanks for emphasizing that. And I think that most men, and I don’t know, we can speak for everybody on the planet, are probably more concerned with their physical well-being than their emotional or psychological mental well-being. And I think that there’s a huge opportunity there, like you were emphasizing to be a little bit more aware of and cognizant of our mental health.

And part of that is just being able to express yourself and if you don’t have that family member or family members, if you’re not plugged into a support group, then maybe the method of last resort would be to seek out professional help, like you were saying.

David Ross: Yeah.

David Hirsch: Thank you for being so open and transparent about that. I’m hoping that more men will hear the message and be less reluctant to follow through.

David Ross: Yeah. Thank you.

David Hirsch: So if somebody wants to learn more about your work or to contact you, what’s the best way to do that?

David Ross: The best way to contact me would be by email, and that would be MensRareDiseaseMH@gmail.com.

David Hirsch: Okay. We’ll ensure to include that in the show notes so it’ll make it as easy as possible for people to follow up with you. David, thank you for taking the time and many insights. As a reminder, David is just one of the dads who’s part of the Special Fathers Network, the mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. David, thanks again.

David Ross: Thank you, David.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.

Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.