ONCE UPON A GENE - EPISODE 155

CRELD1 Dadvocate Paying the Ultimate Price - Seeking Diagnosis for His Two Children, and Raising Awareness with Adam Clatworthy

Adam Clatworthy is a passionate advocate and blogger with a focus on the importance of the caregiver voice and how much expertise we, as parents, caregivers and patients bring to the table. 

EPISODE HIGHLIGHTS

Can you tell us about your family?

My wife is a pediatric nurse and I work in communications. We have a daughter named Daisy who will be 7 years old soon and a son named Alfie who is 17 months. We lost my daughter Lola just over a year ago. Our rare disease journey started with Lola and we didn't know what it was until about 18 months ago. When she was born, there were things that initially worried us and then her first seizure happened when she was 4 months old. Despite seeing several specialists over the following months, doctors didn't know what was causing Lola's symptoms. After Alfie began displaying the same symptoms as Lola, we went back to the geneticist and we were able to confirm the condition they both had was CRELD1. 

Reflecting on what you know now about Lola's medical care, how do you approach Alfie's appointments?

We feel heard and our neurologist recently presented a case study about the importance of listening to parents as part of the diagnosis phase. He reached out to us to understand as much as possible. When we talk about Alfie's treatment options, we feel heard when we share what did and didn't work for Lola. We're also exploring therapeutic and more natural remedies as well, so we're more resistant to trying multiple drugs and we seek out experts in fields that support the use of supplements and more natural remedies. While those remedies aren't always recognized in the general medical population, we have pushed to get guidance from the right people and bring it all together to work the best it can for Alfie. 

What has been your experience connecting with other rare disease dads?

I find that it's a struggle for men to talk about things and it's helpful to have an outlet to get things off your chest, vent, and get the pain and anger out of your head. Since starting the journey with Lola, I have lost touch with a lot of my friends because they didn't know how to be around me. There are a lot of moms in the rare disease community, which is great for my wife, but there aren't a lot of dads in the support groups.

LINKS AND RESOURCES MENTIONED

Global Genes Patient Advocacy Summit Recordings

https://www.cvent.com/

CRELD1 Warriors Website

https://www.creld1.com/

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