A FORMER Keighley woman has won charity status for her support group for people with autoinflammatory conditions.

Rachel Rimmer says she gained the status after building respect amongst medical professionals, drug firms and government officials.

RACC-UK – the Rare Autoinflammatory Conditions Community UK – brings together patients, families and medical professionals in rheumatology, immunology and nephrology.

Rachel said patients in the UK often endured long delays to diagnosis, impacting on their long-term health and quality of life.

She said: “As rare genetic diseases they often leave patients feeling vulnerable and isolated with little support.”

Rachel, 32, who now lives in Oxford, has suffered with autoinflammatory problems since growing up in Long Lee.

She said she set up RACC-UK because she could not find adequate support and advice on her own condition, Hyper IgD syndrome, where unexplained inflammation causes symptoms including fever, joint pain, skin rash, headaches and abdominal pain. Episodes can last several days.

Rachel said: “The first 16 years of my life I was undiagnosed. I was on the children’s ward for several years at Airedale Hospital with illnesses. Great Ormond Street Hospital realised in 2003 when I had genetic tests.

“Since then I have struggled to maintain a job, and I struggle with anxiety.

“There was no one else I knew with Hyper IgD syndrome, no peer support. I reached out to a US organisation to put me in touch with other people. I started the first Facebook group.”

In 2017 Rachel set up RACC-UK, developing discussion groups for members suffering auto inflammatory conditions, and this year she took on expert trustees. She said the charity was a registered stakeholder for NHS Clinical Reference Groups relevant to autoinflammatory conditions.

Rachel said: “We talk to NHS England about how new drug policies would affect us, and we carry out patient impact work with the pharmaceutical companies.”

“It was amazing being recognised as a charity. This is something I wanted as a patient when I was younger. “It’s not only that we can feel supported by other patients going through the same thing, but we can make changes and influence policies.

Rachel’s friend Donna Allwood, who lives in Keighley, said: “Rachel has suffered since birth and through all the bad times she has been positive and wanted to help patients just like herself.

“Rachel goes all over the world, health permitting, expressing love, and helping patients, families and professionals understand more about these conditions.”

Email info@raccuk.com to contact the charity.