07/21/2026
Earlier this summer, I shot a very special extended family session for my cousins family. My cousin Heather was not able to be there due to her illness, but we were able to photoshop her into several photos using older photos of her before her illness left her bed-bound.
My beautiful cousin Heather suffers from Ehlers-Danlos Syndrome/Hypermobile Spectrum. Though she was just recently diagnosed, she has had this her entire life. It is a genetic connective tissue disorder that causes the body to create faulty collagen. I want to use this opportunity to spread awareness of this disorder and how it has negatively impacted her life.
Collagen is the glue that holds blood vessels, joints, ligaments, bone, muscle, skin & organs together. EDS patients have collagen that acts more like taffy than a rubber band. This means they have stretchy blood vessels, skin, joints, and extreme hypermobility leading to dislocations/subluxations of joints, slow healing of wounds, easy bleeding/bruising, premature degenerative neck/spine/joint issues, vascular problems, and chronic pain.
EDS commonly coexists with several other conditions, most often being POTS & Mast Cell Activation Syndrome. These three are known as the 'Terrible Trifecta'. Currently, my cousin has 10 comorbidities that were directly caused by the EDS and is in the process of being tested for more.
There is no cure. It is usually degenerative. Treatment consists of symptom management, management of comorbidities & yearly preventative imaging tests for high-risk complications such as Aortic Aneurysm, Aortic Dissection, Stroke, internal bleeding & organ rupture or prolapse.
EDS is a condition you are born with. Very few are diagnosed as children. Many start having symptoms as teens or young adults, as hormone changes play a role in symptom severity. Athletes are more prone to multiple injuries, which may lead to joint damage. Peri-menopause is another common cause of the increase in symptom severity in EDS patients, also due to hormonal changes. Reproductive complications, multiple miscarriages, and stillbirths are very common. Some people go undiagnosed for most of their lives until complications, an increase in symptom severity, or comorbidities arise, and even after that, it can take several more years to get a formal diagnosis.
I want to help spread awareness recognize my cousin and her incredible strength and to hopefully help others. Early diagnosis is important to try to prevent irreversible damage to tissue, nerves, joints, possible complications with pregnancy, surgery/anesthesia, vascular disease, organ prolapse/rupture, other high-risk complications, chronic pain, and the development of additional comorbidities.
My beautiful cousin is now fully disabled, bedbound, and needs 24-hour care. Her symptoms and pain can change not just from hour to hour, but minute to minute, and her family and caregivers are doing their very best to take each day, and each unpredictable moment, as it comes.
You can donate to her go fund me here: https://gofund.me/31f3720eb
