Stumbled across this and I love it. I have a niche newsletter too - I just recently started a vegan newsletter before realising that there are hardly any vegans on Substack. The ones that are here are mainly creating recipes. Few people are writing - or reading - about the lifestyle. I already have a background in writing and solid contacts in veganism, but these people aren't on Substack and, like you say, don't know what it is. It's tricky but, just like you, I genuinely love this work. Besides, any number of views still means that people are seeing and engaging with my work, and that is precious to me.
Thank you for writing this post, Leigh!. As a fellow CHD Substack writer—albeit from a different perspective— I definitely "get it." The reason people read Henry's Heart is because they care about my family. This is a great reason, as we are in the thick of the early days of the single ventricle path at only 3.5 months old. I'm not trying to go viral at all; in fact, I worry about what my son will think of all of this when he's older. I hope I'm respecting his privacy and dignity. (I would so love your perspective on the phenomenon of families sharing their babies' health journeys publicly)
The reason I read and recommend The Heart Dialogues is because I hope where we are now really is just the very, very beginning. Your writing—particularly your profiles of specific adults with CHD—helps me strategize for the future as a parent. I recognize that CHD patients and their parents are two vastly different groups, and that your community here is much, much more geared toward the former. But when you talk about your relationship with your parents, and how their memories of your early CHD days are so different from yours, I take notes for my parenting journey with my son. I know I'll never fully understand what it's like to be him, to live with single ventricle physiology, or to feel different from others with a nearly invisible illness. But perspectives like yours will, I hope, help my family weave CHD into our everyday lives in a nuanced way.
As for why outsiders are not subscribing to your Substack, I honestly think people don't care about medical-related information unless they have to (or, unless they're worried they will one day have to). Unlike cancer, for example, CHD isn't something one can acquire later in life. I say this because I probably wouldn't have sought out your Substack before I knew I'd be a part of this world myself. Hopefully, projects like yours will change that.
I’m so glad you are writing this because nobody else is bravely sharing for a public audience and everything you write is spot-on. CHD is a niche and a topic that I know most people don't care much about, and it can be too complicated to easily explain. But for those of us with a vested interest every little bit of what you say is interesting and worthwhile. I’m always very happy to share and promote what you write. ❤️
Thanks for putting so much effort into this podcast Leigh. As a 75 yr old TOFer, I grew up not knowing anyone else who had a congenital heart defect. It’s good to see your focus on our shared population. I will make sure that my Zipper Sisters on facebook are aware of your podcast as well as the TOF community on FB.
Dec 4, 2023·edited Dec 4, 2023Liked by Leigh Kamping-Carder
I love your newsletter, Leigh! I subscribe to exactly 4 newsletters. One’s about cooking, one is about parenting, and one is about tech and publishing. Yours is the only one I consistently open and read. It reminds me of my favorite magazine and newspaper columns; you’ve got a clear and compassionate voice, and compelling stories to tell. And that’s from a person who is barely in your Venn diagram ;)! Please keep up the good work! Xxoo
I love your candor in this piece. Anything CHD is difficult --especially advocating! Oh, the number of days I woke up and wanted to quit and never think about any of it again! I predict The Heart Dialogues will grow ( just like the Zipper Sisters have over the past dozen years)! Keep going, and thank you!
"The readers who tell me they feel seen. The woman who is making plans to see a cardiologist again after reading my newsletter."
That's me! And that's me, too!
This whole essay is also me. As a fellow Substack author who sees all those explosive growth charts TPTB send out touting this newsletter or that one and knowing I don't compare, I struggle similarly with wanting to see such growth while knowing my subject matter is very niche. But at the end of the day, writing this newsletter makes me happy whether 10 people are reading it or 10,000. So I keep on keepin' on.
Please keep it up! You forgot that your writing also matters to the health care providers like me who have spent their whole careers caring for kids (& now adults) with CHD, loving it but also trying to do better. Thank you!!
I love that you love doing this because you are giving a voice to many in the CHD community who often feel invisible because their CHD is not visible. Today, I had a conversation about why the facts about CHD and its prevalence is not widely acknowledged or understood. I get it. Keep writing. You should be featured on the PBS Newshour’s, My Spectacular Moment.
Dec 4, 2023·edited Dec 4, 2023Liked by Leigh Kamping-Carder
I’ve learned a lot about CHD from your newsletter. I have a friend with CHD. Thank you for the amazing, insightful, and well-written work that you do to help people understand these important issues.
I'm so grateful to have found this Substack via your fascinating conversation on Burnt Toast, and am glad you're sticking to your niche. It's an important and interesting topic everyone should know more about, especially as it pertains to the many faces of the actual lives of ppl with congenital heart disease. Thank you for doing what you do!
Stumbled across this and I love it. I have a niche newsletter too - I just recently started a vegan newsletter before realising that there are hardly any vegans on Substack. The ones that are here are mainly creating recipes. Few people are writing - or reading - about the lifestyle. I already have a background in writing and solid contacts in veganism, but these people aren't on Substack and, like you say, don't know what it is. It's tricky but, just like you, I genuinely love this work. Besides, any number of views still means that people are seeing and engaging with my work, and that is precious to me.
Thank you for writing this post, Leigh!. As a fellow CHD Substack writer—albeit from a different perspective— I definitely "get it." The reason people read Henry's Heart is because they care about my family. This is a great reason, as we are in the thick of the early days of the single ventricle path at only 3.5 months old. I'm not trying to go viral at all; in fact, I worry about what my son will think of all of this when he's older. I hope I'm respecting his privacy and dignity. (I would so love your perspective on the phenomenon of families sharing their babies' health journeys publicly)
The reason I read and recommend The Heart Dialogues is because I hope where we are now really is just the very, very beginning. Your writing—particularly your profiles of specific adults with CHD—helps me strategize for the future as a parent. I recognize that CHD patients and their parents are two vastly different groups, and that your community here is much, much more geared toward the former. But when you talk about your relationship with your parents, and how their memories of your early CHD days are so different from yours, I take notes for my parenting journey with my son. I know I'll never fully understand what it's like to be him, to live with single ventricle physiology, or to feel different from others with a nearly invisible illness. But perspectives like yours will, I hope, help my family weave CHD into our everyday lives in a nuanced way.
As for why outsiders are not subscribing to your Substack, I honestly think people don't care about medical-related information unless they have to (or, unless they're worried they will one day have to). Unlike cancer, for example, CHD isn't something one can acquire later in life. I say this because I probably wouldn't have sought out your Substack before I knew I'd be a part of this world myself. Hopefully, projects like yours will change that.
I’m so glad you are writing this because nobody else is bravely sharing for a public audience and everything you write is spot-on. CHD is a niche and a topic that I know most people don't care much about, and it can be too complicated to easily explain. But for those of us with a vested interest every little bit of what you say is interesting and worthwhile. I’m always very happy to share and promote what you write. ❤️
Thanks for putting so much effort into this podcast Leigh. As a 75 yr old TOFer, I grew up not knowing anyone else who had a congenital heart defect. It’s good to see your focus on our shared population. I will make sure that my Zipper Sisters on facebook are aware of your podcast as well as the TOF community on FB.
Tina
I love your newsletter, Leigh! I subscribe to exactly 4 newsletters. One’s about cooking, one is about parenting, and one is about tech and publishing. Yours is the only one I consistently open and read. It reminds me of my favorite magazine and newspaper columns; you’ve got a clear and compassionate voice, and compelling stories to tell. And that’s from a person who is barely in your Venn diagram ;)! Please keep up the good work! Xxoo
I relate to every sentence, if you replace "congenital heart disease" with "analysis of the Dutch news in English." :) Thank you for posting this.
I love your candor in this piece. Anything CHD is difficult --especially advocating! Oh, the number of days I woke up and wanted to quit and never think about any of it again! I predict The Heart Dialogues will grow ( just like the Zipper Sisters have over the past dozen years)! Keep going, and thank you!
These stories matter. Your voice matters. Thank you for writing. 💛
"The readers who tell me they feel seen. The woman who is making plans to see a cardiologist again after reading my newsletter."
That's me! And that's me, too!
This whole essay is also me. As a fellow Substack author who sees all those explosive growth charts TPTB send out touting this newsletter or that one and knowing I don't compare, I struggle similarly with wanting to see such growth while knowing my subject matter is very niche. But at the end of the day, writing this newsletter makes me happy whether 10 people are reading it or 10,000. So I keep on keepin' on.
Please keep it up! You forgot that your writing also matters to the health care providers like me who have spent their whole careers caring for kids (& now adults) with CHD, loving it but also trying to do better. Thank you!!
Please keep up your amazing work! It matters to a lot of people 😊
I love that you love doing this because you are giving a voice to many in the CHD community who often feel invisible because their CHD is not visible. Today, I had a conversation about why the facts about CHD and its prevalence is not widely acknowledged or understood. I get it. Keep writing. You should be featured on the PBS Newshour’s, My Spectacular Moment.
I’ve learned a lot about CHD from your newsletter. I have a friend with CHD. Thank you for the amazing, insightful, and well-written work that you do to help people understand these important issues.
I'm so grateful to have found this Substack via your fascinating conversation on Burnt Toast, and am glad you're sticking to your niche. It's an important and interesting topic everyone should know more about, especially as it pertains to the many faces of the actual lives of ppl with congenital heart disease. Thank you for doing what you do!