Jemma Levy speaks movingly about coping with Ehlers-Danlos, a rare illness which affects connective tissue
December 13, 2019 12:30
ByRosa Doherty, Rosa Doherty
For Jemma Levy, 30, even the smallest sip of water causes her agonising pain. She spends most of her time connected to a feeding tube and on an average day vomits ten times.
The Mill Hill resident suffers from a rare condition, Ehlers-Danlos, that affects connective tissue. The failure of her digestive system has left her virtually housebound. She has given up on her career dreams and been advised that she should not get pregnant. Her husband Alex, 31, who works in finance, helps with her care and their situation has involved a big lifestyle change.
Now her best friend Claudia Green has launched a fundraising drive in support of two charities researching the condition, for which there is currently no cure.
“No one knows about the condition,” said Mrs Levy, a former Immanuel College student, adding that, in her case, it had taken 17 years to diagnose.
“Every time I go to see my doctors, I ask them if there is anything they can do to help me, even just to ease the nausea that I suffer. Every time they tell me I’m already taking [the maximum medication] I can and there is nothing they can do.
“I know they are doing all they can for me but a silent tear falls when they tell me what I already know.”
Mrs Levy takes 15 anti-sickness drugs a day yet her constant sickness keeps her up at night and means she is unable to sleep lying down.
Her condition has worsened over the past 18 months and she wonders if things would have turned out differently had she been diagnosed when she first displayed symptoms at the age of 12.
“It is hard to say what would have happened but I could have started medication sooner and it might have kept it under control.
“My system has deteriorated so much it can’t be fixed. And there is such little awareness around the condition.”
After the first symptoms, she began to experience issues with her shoulders and back, due to instability in her joints.
Mrs Levy continued to visit doctors, unable to comprehend why she was prone to so many problems.
Ms Green — her best friend since their days at Rosh Pinah Nursery — told the JC she had been thinking about what she wanted for her own 30th birthday.
“Nothing material came close to the desire I have to raise awareness and fund research for charities that help with her illness.
“Jemma has been in my life since I was two. We’ve gone through everything together from nursery school to walking down the aisle as a bridesmaid at her wedding. She’s not just my best friend, I consider her family.”
She wants to raise money for two charities, Gastroparesis and Intestinal Failure Support and Ehlers-Danlos Support UK.
“Neither of these charities is well funded. They don’t have the profile that other conditions get. I want to help them find solutions to manage these illnesses and lessen patients’ struggles, if not one day find a cure.”
Mrs Levy is grateful for her friend’s efforts, saying: “It is really hard. I spend my life in hospitals, having operations, at doctors and lying on the sofa. It is nice to know she wants to do this for me.
“I don’t get to go out and see my friends and that is what I find really hard. The things I miss out on, the birthdays, the weddings.”
But she is comforted by the support of her family and loved ones.
“They are amazing and I know I’m really lucky to have them in my life.”
https://www.gofundme.com/f/raising-funds-for-vital-research-and-support