What's your advocacy expertise?

I was diagnosed at the age of 55, with the autoimmune disease SSc (Systemic Sclerosis Diffuse), in '13.
I soon discovered I was lost in the autoimmune disease world, that is predominantly made up of females, at an approximate 80/20% ratio. And I found no comfort or validation in any of the support groups, where I was the only male. Since my Scleroderma Patient Advocating Career, started in '14, I've pushed that us male voice to Be Heard to be Cured too.
I am the co-founder and co-facilitator of the Males only Scleroderma, online, support group: The 20%: Men Living With Scleroderma in June of '21. And aside from the support group becoming international right from the start, we just celebrated our 5 year anniversary.
I have helped make the voices of male Scleroderma patients finally heard. A legacy that im extremely proud off.

I'm an HIV advocate. I have been HIV positive for almost 19 years this year so I have seen the medical advancements take place in real time. I also advocate for Diabetes, Sickle Cell Anemia, Cerebral Palsy, and Autism.

I am the author of the book *Chinese Medicine and the Management of Hypermobile Ehlers-Danlos Syndrome* (Singing Dragon 2023) and I have a dedicated website for folks with Ehlers Danlos syndrome and the common comorbid conditions:

https://holistichealthandheds.com/about/

I was a Spanish professor in my first career so education is of primary importance to me. Everything I do is my own work (no AI), and I post two new blogs every month:

https://holistichealthandheds.com/blog/

Between my personal experience with HSD/hEDS and MCAS and my professional experience that began over ten years ago, I have a lot of meaningful information to share.

I also urge my patients to take part in the SHN's offerings and truly appreciate your advocacy training (which I recently completed)!

Hi all! I was born with a genetic disorder called Turner syndrome. I wasn’t diagnosed until I was around 13 years old. When I was diagnosed, I had no idea what Turner syndrome is, and it turns out I’m just one of many who didn’t know about Turner syndrome. It’s a condition that can cause a lot of complications, and can lead to disability. However, since Turner syndrome is not well known, it can be sometimes be hard for people to understand why someone with Turner syndrome might need disability accommodations. There have been times when I have struggled to get accommodations, and have even been denied. I had to appeal accommodation decisions. For this reason, I started a blog focused on my experience with Turner syndrome. I love to write, and I’ve been told I’m a good writer. I decided to use my writing skills to spread awareness.

I also write a lot about living with mental illness. I have had depression since childhood. I didn’t reach out for help until adulthood because of the stigma on mental illnesses. I want to help fight that stigma.