19 In Personal

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

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19 Comments

  • Reply
    The Good Buy/Good-Bye Book: Silk or Satin & Link Up On the Edge #171 – Shelbee On the Edge
    November 15, 2019 at 3:01 am

    […] strides in raising awareness about a connective tissue disease from which she suffers in her post, My Condition – Ehlers Danlos Syndrome is in the Spotlight. I applaud Jess’s initiative in using her blogging platform to share her struggles and spread […]

  • Reply
    shelbeeontheedge1
    November 10, 2019 at 7:51 am

    Jess, thanks so much for sharing more details about EDS. I think you are doing a great job at spreading awareness. You and I have discussed this in person…the importance of using our platforms for the better good even if it means putting our own struggles into the spotlight. I applaud you for sharing and I am so blessed to have you as a friend who supports my sharing all the stuff I feel compelled to share. Keep up the great work, my friend! And thanks for linking up this post so I didn’t miss it!

    Shelbee
    http://www.shelbeeontheedge.com

    • Reply
      Jess Jannenga
      November 10, 2019 at 10:28 am

      Thank you my friend. I was surprised to hear that Lena Dunham now has it, but it affects anyone. I appreciate your support as well Shelbee! xx

  • Reply
    Mica
    November 10, 2019 at 12:09 am

    It’s good you can raise awareness about it on your blog too! A friend was telling me she had just learned about the disease and let her know I knew a couple of bloggers (including yourself!) who have it if she ever wants to know more! 🙂

    Hope that you are having a great weekend! We went for our annual family Christmas photo with Santa yesterday, with two kids and a dog it didn’t quite go as planned, ha!

    • Reply
      Jess Jannenga
      November 10, 2019 at 10:26 am

      HI Mica, thank you! I know another blogger, in fashion that has EDS as well. Yes, I can answer questions if anyone has any! Aw, I bet the photo will be darling!

  • Reply
    Straight A Style
    November 9, 2019 at 4:28 pm

    Chronic pain is so difficult, silent, and hard to live with. I am truly so sorry this is something you face daily. You are amazingly strong!!! I am glad your condition is getting more awareness.

    Amy Ann
    Straight A Style

    • Reply
      Jess Jannenga
      November 10, 2019 at 10:25 am

      Thank you Amy! It is tiring some days. I appreciate your comments and just try I best. I was glad to see it in the Spotlight recently and that it is getting more acknoledgement

  • Reply
    mummabstylish
    November 8, 2019 at 5:02 pm

    Thanks for sharing your syndrome with us. No-one knows what others are dealing with from day to day, so it’s good that you can share it with us. A really interesting post Jess. Hope you’re feeling well atm. Jacqui xx

    • Reply
      Jess Jannenga
      November 8, 2019 at 6:38 pm

      Thank you Jacqui! That is so true. It used to be something where you would judge if someone who didn’t look ill parked in the handicapped spot. Now, there is no judgment as I am very much aware of how many invisible illnesses there are and you never know what people’s hardships are. Glad you liked the post, I am doing fine right now, mornings are the toughest. 🙂 xx

  • Reply
    andathousandwords
    November 8, 2019 at 1:24 pm

    You are such an inspiration! Thanks for sharing.

    X Merel
    http://www.andathousandwords.com

    • Reply
      Jess Jannenga
      November 8, 2019 at 6:36 pm

      Thank you so much Merel. Enjoy your weekend!

  • Reply
    suzannecarillo
    November 8, 2019 at 10:51 am

    You really are such an inspiration.

    When I read about Lena Dunham I remembered it was the same disease you have.

    I’ve had Fibromyalgia for about 30 years now. I’ve always found it frustrating to explain to people why I can’t do certain things when they can’t see the problem. I can’t imagine how difficult it must be for you.

    Suzanne

    • Reply
      Jess Jannenga
      November 8, 2019 at 11:06 am

      Thank you Suzanne! I just do what I gotta do, which is what I am sure you do. I understand as sometimes I wonder if certain family members really understand it or the inability to do certain things. A few years ago we went to the Biltmore with family, and there were tons of lines. I was literally crying at the end as I couldn’t stand in line anymore! Moving at a snails pace is really difficult with hypermobility! Hey, if we met, we could always “Not do things” together! You have my understanding.

  • Reply
    Cheryl Tucker
    November 8, 2019 at 10:03 am

    Jess you are such an inspiration. You carry on with life and don’t seem to miss a beat even though you are struggling. I love that you are sharing your story and knowledge about this disease. I had never heard of it. You are my hero!

    Peace!
    Cheryl

    • Reply
      Jess Jannenga
      November 8, 2019 at 10:24 am

      Hi Cheryl,
      thank you so much, that means alot! I have good and bad days but try my best each day. I would go bonkers being in bed all of the time, so I just try and keep busy, taking my mind off of things. It has taken me many years to get to a better place. xx

  • Reply
    Suzanne Smith
    November 8, 2019 at 9:15 am

    Hi Jess…I know you’ve been struggling with EDS and I so admire your ability to always be positive and get on with your life in spite of everything you’re going through. I’m so happy that more light is being shed on EDS and hopefully it will be more understood and as a result those in need will have better treatment options.

    • Reply
      Jess Jannenga
      November 8, 2019 at 9:27 am

      Thanks very much Suzanne! Yes, it is tough some days and it can wear me down mentally and emotionally if I let it. I appreciate your comments. This is the goal that more research can be done as well as testing- it seems since I developed this in 2008, there has been some progress made. Certainly more awareness. Thank you! Have a great weekend!

  • Reply
    Michelle Churchman
    November 8, 2019 at 1:35 am

    Jess, I can so relate since I have fibromyalgia / CSF. IMHO, it’s important to be upfront about these illnesses / conditions. First, it helps people adjust their expectations about what we can and cannot do. Secondly, it may help someone who is suffering, but not yet diagnosed. And last, it may both the person with an illness and their loved ones to not feel isolated. Excellent post!

    • Reply
      Jess Jannenga
      November 8, 2019 at 9:25 am

      Hi Michelle,
      I can empathize as I know Fibromyalgia and /CSF are difficult to deal with as well. So true on all of your points.Because of my hypermobility , I can not stand long and do avoid places where I have to wait in line – so I have to say no to museums and places like that. I am on several forums just to converse with other people who are going through the same thing, as it does help to have those who understand and may make suggestions. I wish you well.

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