Skip to content

Red Deer family with rare disease seeking support

Sherri Jones and her family need help.
Sherri Jones and her family are helping raise awareness during Rare Disease Month and are also looking for support to help seek treatment. (Contributed photo)

Sherri Jones and her family need help.

Jones, 52, who suffers from a long list of rare diseases including Tarlov Cyst Disease, Adhesive Arachnoiditis, Dysautonomia, Ehlers-Danlos Syndrome and CNS Disorder, moved to Red Deer in April of 2022 and has been looking for a family doctor to take her and her family on. She has been unsuccessful in that pursuit.

“I believe that my health situation is making everyone else’s health even worse, but their problems are not solely based on my current problems,” Jones said in an email.

“My Mom, my son, and my three grandsons are all struggling in their unique ways from their own health problems caused by what is seen as our family-inherited diseases, which are now added to by the worry they feel for me, and each other.”

Jones said she needs a family doctor to help prescribe her medication that will manage a litany of symptoms. She’s tried the Primary Care Network with no avail and has also reached out to 811 for support.

On Monday, a GoFundMe was created for Jones and her family entitled “Multi-Generational Rare Disease Family”.

Jones said she started the GoFundMe to help her family survive their rare disease, which may be genetic, but also to help others “describe what they face”.

“Two things come with almost all rare diseases, and that’s judgment and a lack of access to compassionate health care. Especially if the disease you’re looking for help with is invisible,” Jones writes in the GoFundMe.

“It’s taken me years to realize how difficult it is for our society to even understand the pain, the problems, the barriers to care, and the denials for community support because we’re unique and difficult to describe, and this list of barriers are costing lives around the globe.”

The goal for the GoFundMe is $100,000 which will help offset the expenses the family will incur if the specialist care they require comes from outside of Canada.

February is Rare Disease Month and Feb. 28 is Rare Disease Day.

For more information, you can reach out to Jones directly