Rare Disease Day

My gift is definitely not speaking, especially with the brain fog, and I am so proud of the ones who do. So I want to share what they say and their videos when I can get the chance because they do a much better job than I could ever do explaining or describing.

We will be watching this today on Netflix. I actually watched her TED Talk a few months back and when I googled her a few days ago trying to find the video again, what would you think I would stumble on? That she now has also been diagnosed with EDS & POTS.

This is my friend Angie who when I found her YouTube channel a few months ago, thought her story was my story. She is such an inspiration and raising 3 young children while dealing with multiple rare illnesses.

I wish I had saw her video years ago. I have a similar story in that I also luckily ended up in an expert's hands. I remember thinking this cardiologist would be another waste of time where he would just say my heart looked fine. I would never expect that he would not only diagnose my POTS, but also my pelvic and abdominal pain because he was an EDS researcher that people fly all over the country to come see.

You can also look back at this post where I shared more people's stories with vascular compressions.

This video is one of the best at showing such a true example of what most EDSers experience going to a doctor or ER and the patient's reaction to hearing she has it was very much my reaction when I found out. Bravo to this show for doing such a wonderful job portraying what it's really like.

This week I found out that EDS was mentioned in The Good Doctor TV show and before that The Resident (above) and Grey's Anatomy. Although our community has been so thankful to have light shed on our rare disease, we all wish we came across those doctors in real life that are actually determined to figure out the puzzle.

Another big deal is that we have representation finally! Celebrities and people in the spotlight are now speaking up that they have EDS and causing more awareness and attention to our illness. 

Jameela Jamil was the first and she does little shout outs to her zebra community all the time.

The next was the singer, Sia! It's interesting because I've always identified with her songs and after learning that she has EDS, it just gives so much explanation to all her words on a different level.

Miss Maryland! Another great article write up on BBC here.

and Miss America! More on her here and how EDS got her interested in science and medicine.


POTS is not rare just not well known, MCAS is rare but well known, EDS is rare and not well known (but shouldn't be), and Vascular Compressions (MALS, SMAS, NCS, MTS) are rare and having multiple is even rarer.

I love this that my friend Michelle made! In the first video at the start of the post Jennifer Brea shares how big of a deal the community she found was with the same issues. They were the ones having to try different things themselves and research because most doctors aren't. The determination and want to help others of people with these rare diseases is just incredible. The special person that creates a Facebook group so they can share with those just finding out a diagnosis and help them navigate or prevent problems they had to experience. They are the ones making a difference.

I know this week I talked about why it's important to share, why friends & family support is also so important, but what I wanted to focus on this post is to champion those with rare illnesses. I ask if you know someone with a rare disease, please listen to them, encourage them, and tell them they are doing a great job. They are accepting, they are coping, they are adapting, even when life is so different than before or looks different than they expected, they are still fighting even if it's hard for you to see. If you know someone with a rare disease tell them how proud you are of them and how brave they are.


My fellow warriors, if it wasn't for you I'd be lost. You helped me find doctors, know what the right tests are, treatment options, surgery risks and benefits, that I'm not alone, that what I'm experiencing is real, and that we are here for each other. I can ask no question too insignificant and that you will be there to lift me up and understand when I have those disappointments of not being believed or a doctor not working out. Thank you.