Double D’s. And not the good kind.

Disease and Depression.

All too often, after being diagnosed with a chronic illness, patients just give up. They withdraw. They stop trying. They stop caring about people and the things they once held dear. Depression sets in, which, by the way, is also a chronic illness and complicates the path to wellness. For example, I read an article once that really caught my eye. It detailed an inspirational story about a heroic young woman in the UK named Jess Laughton.

She was studying to become a neonatal nurse when she was diagnosed with Ehlers-Danlos syndrome (EDS), a type of connective tissue disease.

Classified as a rare disease, EDS affects the skin that supports bones, blood vessels, and various other organs throughout the body. Patients, young and old, may suffer from chronic pain, stiffness, and arthritis. They can also experience dislocated joints and gait and mobility issues. While everyone’s experience is different, people with EDS frequently develop thin skin that bruises, scars, and tears easily. It depends on the severity of the symptoms, but this disease can be life-threatening and affects approximately 1 in 5,000 worldwide. Gulp.

Because there are no targeted EDS treatments available, patients and their healthcare teams are challenged to simply try to manage the symptoms, in hopes of preventing injury.

Jess, however, refuses to give up! In the prime of her life, her early 20s, Jess made the difficult decision to leave her beloved career dreams behind in order to take care of herself. She had to adjust to some major lifestyle changes—changes that also affected her financially. But would that crush her determination to make a mark in life? No way! Having such a love and adoration for young children, Jess decided to devote her time and energy to crafting, in hopes of helping sickly and “preemie” babies.

Handy in knitting little blankets, booties, and hats, she started an online knitting group, Tiny Treasures, which has attracted the attention and commitment from hundreds of other knitters all over the world. In just a few months, they’ve pooled their talents to knit little hats and such for the preemies, which Jess mails to hospitals all over the United Kingdom. Here is a woman who could have given up, who could’ve stopped trying, but she chose otherwise!

To learn more about Ehlers-Danlos syndrome (EDS), visit:

• NIH
• NHS
• EDNF

To learn more about the “Big D,” visit:

• NIH
• DBS Alliance
• NAMI

To learn more about Tiny Treasures, visit: http://www.tinyt.co.uk/

And now we want to hear from you. Are you living with a chronic illness and/or battling the Big “D” (depression)? What tips and techniques work to help you get the most out of your day? Share your story and inspire the rare disease community this #NERVEmber.