Hi everybody,

I've joined the challenge for the Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month this May! I’m participating in the 31 Days of EDS & HSD to raise awareness and funds for The Ehlers-Danlos Society. Each day of May, I’m posting about EDS & HSD and all the different facets of managing and experiencing these conditions. Check out my Instagram and/or Facebook each day this month to learn more.

Now, YOU can support ME by donating to my fundraiser for The Ehlers-Danlos Society to support those who deal with these conditions day in and day out. EDS and HSD are big parts of both my work life and personal life, so reaching my goal would make a real difference for me, my friends, my patients, and my loved ones affected by EDS or HSD.

My Story

My fiancé was diagnosed with periodontal EDS and hypermobile EDS, two of the thirteen types of Ehlers-Danlos Syndrome that we currently know of. Because of these conditions, he’s had over 15 surgeries in the last 10 years to manage his symptoms, repair injuries, and to try to improve his day-to-day life. Torn ligaments, hernias, infections, tumors, chiari malformation, and more have left us spending huge chunks of our lives in and out of hospitals, at home recovering, undergoing testing, or prepping for the next procedure. Put simply, it sucks. It's exhausting. It’s unfair. And although I’m a specialist in this field, there’s SO MUCH I still wish I knew, including what the right and wrong decisions are for managing these conditions, especially pEDS, which is too rare to prepare for in many cases.

As a physical therapist who specializes in treating EDS, HSD, and their related conditions, I see some variation of my story all day, every day. More work needs to be done on a mass scale to better serve these individuals. Specialists in this field are few and far between, and the few specialists we do have are severely overworked and burnt out as they amass long waitlists.

Many non-specialists unfortunately are ill-equipped and under-educated on these conditions, which leads them to treat patients incorrectly, often causing further injury. In other cases, these providers fail to believe patients’ symptoms and brush them off completely, leading to these patients’ fear of providers and avoidance of further care.

We need to do better. We need more specialists, better education, and more care for this population.

What is EDS?

The Ehlers-Danlos syndromes (EDS) are a group of disorders that affect the body’s connective tissues, including the skin, joints, blood vessels, gut, and many other organs and tissues. These disorders arise because of abnormal production and function of collagen and allied connective tissue proteins. EDS affects over one in 5000 people of all genders, races, and ages and is a chronic, life-long condition that has a genetic link, so it’s often found in multiple family members.

The signs and symptoms of EDS are abundant and variable depending on the type. They may also vary between members of a family with the same type of EDS. The signs and symptoms include fragile skin with poor healing, bruising and bleeding, and abnormal scarring; frequent joint injuries, widespread joint and muscle pain, dislocations, low muscle tone, and muscle contractures; abnormal musculoskeletal structure such as kyphoscoliosis, hip dysplasia, and short stature; changes in eye structure such as thinning of the cornea; abnormalities of the teeth and gums; and, in some of the rarer types life-threatening complications such as heart valve disease, rupture of organs, and aneurysm formation and rupture of major blood vessels.

Click here to learn more about EDS.

What is pEDS?

Periodontal EDS (pEDS) is currently known to be the rarest form of pEDS, affecting less than 1 in 1 million people. For that reason, not much is understood about this variant. We know it can cause distal joint hypermobility, severe periodontal disease, frequent infections, hernias, and can also lead to vessel or organ rupture.

Click here to learn more about pEDS.

What is HSD?

Hypermobility Spectrum Disorder (HSD) is diagnosed when the musculoskeletal complications of joint hypermobility and joint instability (ease of injury, joint pain, and dislocations for example) arise in a person who does not have the defining features of an underlying syndrome such as EDS or other heritable disorders of connective tissue.

In addition, several related disorders are observed in a number of people with EDS and with HSD. These add complexity to the presentation of their condition and its management. Such related disorders include for example functional bowel disorders; autonomic dysfunction; severe chronic fatigue; neurological concerns including cord and nerve entrapment and sensory neuropathy; immune hypersensitivity and mast cell activation disorders; anxiety disorders and depression; and, ADHD.

Click here to learn more about HSD.

Why donate?

The Ehlers-Danlos Society is a global community dedicated to saving and improving the lives of those affected by the Ehlers-Danlos syndromes, hypermobility spectrum disorders, and related conditions. Their goal is world-wide awareness and better quality of life for all who suffer from these conditions, regardless of geography.

There’s a lot left to learn and understand about EDS, especially hEDS and pEDS. Because pEDS is so rare, we don't know what's dangerous or what to worry about first. Are there scary aspects of this variant that haven't been found yet? We just don't know. So please support me as I work to spread awareness about these conditions, especially pEDS, and donate to my fundraising page here.

Thank you so much for your support,

Morgan Panzer