Ehlers Danlos Syndrome is a hereditary connective tissue disorder. There are many different types of EDS, like Vascular, hypermobile, classical, and 10 other subtypes. I have Classical and Hypermobile, thankfully, these are not life-threatening variants. EDS is believed to be an abnormal structure or function of collagen and other connective tissue proteins.

lisichik / Pixabay

Symptoms and characterizations include;

  • Joint Hypermobility
  • Joint Instability
  • Scoliosis
  • Skin that can be stretched further than normal (skin hyperextensibility)
  • Abnormal Scarring
  • Organ prolapse
  • Hernias
  • Trouble healing from injuries

Keep in mind these are just a few of the symptoms that come along with the variant I have. It is important to note each variant comes with its list of symptoms. 

Diagnosis

If you exhibit the symptoms and traits, sometimes a diagnosis is hard to come by. Personally, I have been having joint issues and subluxations, pain, and many issues throughout my teenage and adult years. I am now 31 and was diagnosed 4 years ago thanks to a great orthopedic doctor that notice my symptoms. Before that, I had never heard of it, and I had been a medical mystery with regular testing since I was 18. 

Diagnosis can be hard to come by because of the lack of knowledge about EDS and its rarity. The Ehlers-Danlos Society reports 1 in 5,000 individuals are said to have EDS, that is all types and worldwide. Hypermobile is the most common type diagnosed and is one of the only types that we have not discovered the chromosome abnormalities like the other types, which means genetic testing will not show hypermobile EDS. After hypermobile, the next common is classical and that lowers the odds even more because only about 30,000 people have this variant.

Testing

Physical examination, a family history,  genetic testing, an echocardiogram, and a skin biopsy are the most common ways to get an official diagnosis. 

EDS Treatment and Prognosis

Unfortunately, there is no cure, but for most types of EDS, the life expectancy of those who are diagnosed is normal. Certain variants however can lead to issues like organ and vessel rupture, gastrointestinal failure, increased risk for lung disease, and more. This is why it is very important to regularly seek medical care with a doctor you trust.

mohamed_hassan / Pixabay

Treatment of your symptoms and prevention from the risk involved with your variant will help you to live the best quality of life. 

Popular treatments include;

  • Pain management
  • Physical Therapy
  • Further testing for side effects, like mast cell disorders, Oral issues, and much more
  • Orthopedic treatment 
  • Joint repair and replacement
  • Regular exercise
  • Diet change
  • Mental health support
  • And more

Living With EDS

Many other issues come along with it, like anxiety, chronic fatigue, depression, and more. Treating yourself kindly is one of the hardest parts of daily life for me. When living with EDS and chronic pain, self-love and self-care is very important. There are times when pain is bad and you try to push on anyway and it just leads to more pain.

Asking for help is one of the biggest things, next to being kind to yourself. Seeking a strong support system is also important, more for your mental health than anything. In my experience, it is hard for me to realize I can not do some of the things I used to do. 

I am thankful for the lower pain days when I can go outside and play with my kids. On the other side of that, I am thankful for the days they lay around with me and watch movies too. 

Yes, things change, my hands are perhaps the worst and most noticeable part of me that is affected. My finger will dislocate easily, and while it happens so often now, it doesn’t bother me as much as it used to, it is still inconvenient. When you can’t scrub the counter without your fingers popping out of place, it can be a damper on even the strongest self-esteem.

andreas160578 / Pixabay

Explaining that you had to have multiple surgeries, including a hip surgery cause your body can’t hold itself together correctly is also hard.

Just like any disability you have to mourn the loss of the person you once were. Treating the pain, physical therapy to strengthen and love your body, and emotional support are the most important things. 

Thank You For Reading

I would love to answer any questions in the comments or by email HERE. As a person who wishes to learn more about diagnosis and treatments, I will be sharing more information in the future as well!