What's your advocacy expertise?
In your advocacy journey, everyone finds their "niche." Some people are amazing at making TikTok content, others find themselves giving keynote speeches, and many find themselves hosting support groups online. What would you consider your expertise?
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)!This is soooo smazing! You're so accomplished! Also thank you for the kind words <3 - Bridget (SHN Team Member)
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.So amazing! What's your blog? oh wow! Thankyou for asking! If you checkout my blog I hope you like it! Here’s the link! http://lifewithcharli.home.blog/
Over 40 years living with MS means I’ve learned a thing or two about it. I share my knowledge in my blog, The MS Wire, and my book, The Multiple Sclerosis Toolbox. I’ve also consulted with the creators of some MS apps and provided a patient’s viewpoint to a pharmaceutical company on better communications with us.
