May is Ehlers Danlos Syndromes and Hypermobility Spectrum Disorder Awareness month, and I’m going to take you through a quick lesson on what that means.
First of all, hyper-mobile joints are common. You probably know someone who is double-jointed. Are you? But the, connective tissue disorders, Ehlers Danlos Syndromes (EDS), and Hypermobility Spectrum Disorders (HSD) are uncommon, complicated, and hard to diagnose.
These connective tissue disorders affect collagen production. Collagen is a protein that gives structure to cells. These disorders affect every part of the body.
When someone has these disorders, the collagen structures throughout their body can be weak or damaged. This can affect all systems and organs throughout the body and cause a large number of issues for those who suffer from these conditions.
The symptoms of these disorders are so vast and varied that diagnosis can be difficult. Some of the most common symptoms include joint pain, chronic fatigue, musculoskeletal pain, gastrointestinal issues, digestive issues, and chronic migraines. People with these disorders may also have problems with their skin, blood vessels, eyes, heart valves, and lungs.
These conditions can be excruciating, debilitating, and affect daily life.
This is my son; Super Z. Hypermobility affects everything we do and every decision. He was diagnosed with hEDS/HSD at the age of 6. It took about nine months for us, as parents, to understand something was off, five months of intense testing, and an additional eight months waiting for a diagnosis by our pediatric geneticist. In hindsight, the signs were always there.
There are many types of these disorders, but no cure for them yet. If you think you may have one of these conditions, speak with a doctor about treatment options to help manage your symptoms and live a higher quality of life.
Have patience there isn't widespread knowledge, even in the medical community, of these disorders yet. Don't forget to be your own advocate. You're doing great!
Leave a comment