A LITTLE MORE INFORMATION ABOUT EHLER’S DANLOS

Here I go again.  I’m up on my soap box today.  Next month is Ehler’s Danlos Awareness Month and this is one of those illnesses that aren’t talked about or known about.  I will tell you a little about my precious niece, Natalie.  She was born with a debilitating type of Ehler’s Danlos.  Other people have difficulty finding someone to give a correct diagnosis and they are living with an ‘invisible’ disease.  They are in pain, are exhausted, along with the many other symptoms that goes with E.D.  But, with Natalie, she had deformed feet and hands.  Her scoliosis was severe and she was put in a plaster body cast for the first year of her life.  After the cast was removed, she taught herself to eat and pick things up with her crooked feet. There were doctor’s visits, rides to the E.R and many sleepless nights from the beginning of her little life.  Later in her life, when her back was curved so severely that it was effecting her breathing and her heart, the spinal surgeries began with rods and pins and braces.  There were eight of those.  Then she found a surgeon to agree to attempt to operate on her permanently clenched fists to open them so she could feel some sort of normalcy.  What many people, even surgeons, are unaware that the collagen deficiency attacks the blood vessels, muscles, and nerves.  The surgeon discovered the many problems once he started and go inside her sweet hands and was forced to stop the surgery.  She is hoping for a future and I am praying for her future.

With all of that having been said, I would like everyone to read what I have put here from the
Ehlers-Danlos Syndrome EDS Awareness organization and educate yourselves about the devastating illness.  Thank you for reading.

This is the Beighton score, it’s the current diagnostic criteria for Hypermobility Syndrome. A score above 4 means you are in the criteria to be diagnosed. This is used in the diagnosis of EDS too. It could be the reason for that ache you get that no one can quite put their finger on
-Reecy

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7 thoughts on “A LITTLE MORE INFORMATION ABOUT EHLER’S DANLOS

  1. You have spoken to me about your niece before, and I am so impressed and saddened by what she has gone through and survived in her life. I think it’s so important to remind people that those with Ehler Danlos who are well enough to be active and vocal about their condition, especially those who are not housebound and who are afflicted with one of the less severe forms of the disease, they are certainly not the worst off of Ehler Danlos patients, and perhaps do a disservice to others by saying that EDS is comprised of only one narrow set of problems. This is an issue that we run into as well with fibromyalgia, Lupus, MS, and chronic fatigue/ME, just to name a few.
    The least ill of us are speaking for the most ill of us. And we would do well to remember that when we write. Thank you for the timely reminder, and for sharing your niece’s story as well.

    Liked by 1 person

    • That is an important fact that I have not thought about. That there is wide spectrum of types of ED. And you are right that there are different levels of each syndrome/disease. You are so welcome for my blogs about my niece. I love her so much.

      Liked by 1 person

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