Born to serve: from Desert Storm to rare disease warrior

Born to serve: from Desert Storm to rare disease warrior

This week’s blog is written by Dan Shockley, a retired U.S Navy Veteran who served in Operation’s Desert Storm, Endurance and Iraqi Freedom. In 2012, at the age of 51, Dan received a diagnosis of a rare gene mutation, attenuated familial adenomatous polyposis (AFAP). This life-changing event spurred Dan on to become a rare disease expert and colon-cancer ambassador, sharing his experiences in an effort to encourage and inspire fellow rare disease patients.  

My Lockdown Journey

My Lockdown Journey

Heather was diagnosed with Fibrous Dysplasia at 10 years old. She has had multiple operations throughout her life and manages her own chronic pain. She also has problems with her thyroid, fatigue and spine. Heather joined FDSSUK as a member around 10 years ago, hoping to learn more about the disease and meet other patients. Heather now volunteers for FDSSUK and is the secretary. She is very passionate about raising awareness of the disease, and enjoys being part of a community that allows her to interact with other patients and carers. This is her lockdown story!

Robyn’s journey: Inner resilience with PK deficiency

Robyn’s journey: Inner resilience with PK deficiency

This week’s blog is guest written by Robyn Silverton, a holistic therapist and trained physiotherapist who also has the rare condition of PK deficiency, a haemolytic anaemia of which there are 1 in 200,000 patients worldwide. Robyn shares some of her story and what keeps her positive in the face of the challenges associated with having a rare disease.

Rare Resilience during the Pandemic

Rare Resilience during the Pandemic

Today’s guest blg is written by Polly Moyer, Co-founder of the Action for Mal de Debarquement Syndrome UK facebook page and founder of the Familial MdDS facebook group.  Here Polly gives a perspective on the pandemic from someone with Mal de Debarquement...