A STRATFORD-UPON-AVON woman has spoken of living with multiple rare genetic conditions all of her life and where she seeks support in the town to coincide with Rare Disease Day today, Tuesday.
Chelsea Corbett, aged 23, has Hypermobile Ehlers-Danlos Syndrome, and has secondary complications to her heart, lungs, digestive and nervous system.
She told the Herald: “My complications are unfortunately severe, so I have many hospital admissions, and rely on medication and home oxygen.”
Chelsea married Jonathan in September 2014, but just four months later she contracted meningitis and started having seizures.
She said: “I deteriorated quite quickly, and Jonathan is my main carer now. But I still want to have independence as a young person, and Escape Arts drop-in has been one of the things suggested to me.”
Chelsea, who lives in Clover Close, has also recently become a Young Ambassador for the Shakespeare Hospice transitional unit, and is keen to raise awareness about the services that have helped her.
“We would like to be able to give something back. I feel it is a way to try and turn my story into something positive. I also want to give hope to other young people in the community, who may be struggling with poor health.
“I was able to achieve awards at Stratford College, who were really supportive when they knew I wasn’t very well. The local library service has also been a great help when carrying out research, and Citizens’ Advice has been really helpful.”
She added: “Currently, along with my husband, we engage in charity awareness and media work for charities, such as Carers UK and Together for Short Lives.
“Although Rare Disease Day is an international day, I just wanted to bring it to be a bit more local.”
The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives. To find our more see www.rarediseaseday.org