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What the Power of Dreams Can Do

Living with EDS isn't plain sailing and there will be blood, sweat and tears! There will be days you feel angry, resent others, grieve for the life you may have once had and for lost opportunities. There will be times you can't possibly see how to carry on. This is totally okay, feeling upset is not a sign of weakness and it's so important to be honest and open about your feelings. I have found it really helpful to be completely honest and open with people about my condition. With secrecy it is so often associated with shame and embarrassment whereas when you are open and honest, people see things as they are very matter of fact and it is much easier that way.

You know your body…

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Featured

 What It’s Like to Have a Body That’s Literally Falling Apart

For Katryna Kofton, simple tasks like shampooing her hair can end in disaster: her wrists might dislocate, or her thumb could fall out of place. Kofton has hypermobile Ehlers-Danlos syndrome (EDS), a rare genetic condition that affects the body’s connective tissue. This means that her skin is incredibly stretchy and her joints overly flexible. Even her windpipe tends to dislocate. While there is still no known cure for EDS, Kofton is learning to manage her life-changing illness with the help of her family, vlogging about her experience, and playing the ukelele.

Articles of Interest

Chronic Illness Doesn’t Stop You From Being Glamorous

When artist Karolyn Gehrig is undergoing treatment for her chronic illness, she doesn’t want to feel invisible. So she posts glamorous selfies of herself undergoing medical treatments — and looking fabulous — using the hashtag #HospitalGlam.

How to Have Sex When Your Joints Keep Dislocating

Ehlers-Danlos syndrome can alter your sex life by causing discomfort, dislocations, and even broken bones during coitus. We spoke with a woman who has EDS about how she manages her condition and her sex life.

Living With a Rare Disease

I have had health issues my whole life, although mild, we can now look back and see the 'signs' that I wasn't the typical child. I had joint pain as a child and presumed these were the 'growing pains' all my school mates were feeling. I was always very flexible and suffered lots of dislocations.

Resources

Ehlers-Danlos News

Ehlers-Danlos News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment.

EDS Awareness

The mission of EDS Awareness is to ensure greater understanding of Ehlers-Danlos Syndrome by patients, the general public and within the medical community – in order to improve the quality of life for those affected by EDS – and those who care for them.

EDS Today Advocates

Our organization is maintaining our outreach to help those in a medical crisis obtain relevant medical information and to put them in contact with EDS specialist, in hopes to potentially save their lives.

The Ehlers-Danlos Society

The Ehlers-Danlos Society is a global community of individuals, caregivers, healthcare professionals, and supporters, dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes (EDS), hypermobility spectrum disorders (HSD), and related conditions.

Falling Apart At The Seams: My Life With Ehlers-Danlos

Just a 20-something living my life day to day, despite the pain.

MedlinePlus

People with the classical form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic "cigarette paper" scars.

Patient

There are many types of EDS based on different gene mutations affecting the structure or assembly of different collagens. Many syndromes overlap and it may be difficult to differentiate one from the other. All share common features of fragile skin and laxity of joints and ligaments, to a greater or lesser degree.

Sia Reveals That She Has Ehlers Danlos Syndrome, What Is That?

While performing on stage, singer songwriter Sia tends to not reveal much of her head or her face. But on Twitter yesterday, she did reveal some of what she has been going through...