08 Nov My Condition – Ehlers Danlos Syndrome is in the Spotlight

Over this past week, I read about actress Lena Dunham, the creator of HBO’s “Girls”  has made public that she has Ehlers-Danlos Syndrome. 1 in 5,000 people have the condition, according to the National Library of Medicine, and I am one of them as well. The Zebra is the symbol or mascot for EDS, as it is a rare disease, as is this beautiful animal.

Awareness

You all know that Michael J Fox, not only being an actor I used to watch on “Family Ties” is also the celebrity face of Parkinson’s Disease. It brought awareness to the condition and more acknowledgment to people that had the disease and we as offering hope.

In this day and age of social media and mainstream media is in the forefront of our society in terms of information and communication,  several other celebrities have come out speaking about their condition and trials with Ehlers -Danlos Syndrome. Now, this is one way I think social media can be seen in a positive light.- to educate and bring awareness.

I think Michael J Fox and recently, actress Selma Blair speaking out about her difficulties with MS, and being a mom with a debilitating condition, burst the romantic bubble that Hollywood and celebrities create, making them more “real” and relatable. Ms Blair did an interview and spoke about how difficult it was parenting with a disabling disease. She also used a cane on the runway of an award show and did what she could to attend. I have much respect for people in the limelight that try and educate and let people know of their struggles. Often, people look at celebrities as something other than “regular people” as if they are untouchable to what happens to other people.

Quite recently, Sia, an Australian singer, songwriter, and videographer, has come forward speaking about her Ehlers-Danlos Syndrome. I read the report recently on CNN, and it drove me crazy, as they first described it as a neurological condition. Later a note was made to correct the response! Nevertheless, Sia has opened up to the public in the hopes it would educate and create a conversation about the condition.

If you are still unsure about the condition, EDS, is a connective tissue disease that affects skin, joints and blood vessel walls. It also affects body systems such as Gynelogical, Gastrointestinal, Vision, and more. I am missing a gene that causes a deficiency in my connective tissue, ( the fibrous tissue that makes up tendons and ligaments) and I also have hypermobility, which causes joint to move father that the normal range of motion. EDS makes my joints loose and the skin is thinner, causing easy bruising. When I get dry needling I often bruise right away.

There are many types of EDS, and Vascular EDS is the most life-threatening. I have EDS Type III, the Hypermobile Type. I experience chronic pain, stiffness in my joints ( at times) dislocation of my pelvis, muscle chronic pain, as well as gastroparesis ( immobility of the colon) along with many other systemic symptoms. So many diseases are invisible; we need to have compassion and understanding as you never know who is dealing with what privately.

Along with Sia, Jameela Jamil of TV’s “A Good Place” has confirmed she has EDS on her Instagram page.

Most recently, award-winning actress Lena Dunham, of “Girls” fame, has taken to Instagram to announce that she has Ehlers-Danlos Syndrome. She posted a picture of her in a blue floral nightgown with a cane, making light of her outfit choice as she came from her doctor’s office, saying it was an early Halloween costume. It was actually then, that she opened up about her EDS. to teach and share, as well as show that anyone can be afflicted with a condition.

This is one way people can use their “celebrity” in a positive light.

It is so important for people to understand and spread awareness about this chronic invisible diseases-it is then we can understand and learn more about the conditions as well.

Have a wonderful weekend!

Jess xx