Melanie Hartshorn, suffers from Ehlers-Danlos syndrome, and had pioneering surgery to fuse her neck and spine together but now needs an operation to stop her ribs from dislocating
A woman has told how she can’t sing or laugh due to a crippling condition which means she runs the constant risk of her ribs dislocating.
Melanie Hartshorn, who has spent most of her life on her back, has Ehlers-Danlos syndrome (EDS), which causes her skull to dislocate from her neck and spine. The 36-year-old has undergone pioneering surgeries to fuse her neck and spine together and last year she walked for the first time.
Melanie was even well enough to move into her own bungalow and enrolled on a PGCE teaching course. But following surgery last month, she was dealt a devastating blow when doctors discovered four of her ribs had dislocated.
Melanie, from Northumberland, now needs to raise £85,000 to have an operation which is not available on the NHS. Surgeons say she must have the dislocated ribs fused to avoid more ‘popping out’ which could seriously affect her breathing.
She is forced to remain lying down while she desperately tries to raise funds to pay for the surgery in Spain. “The doctors say four ribs have dislocated but more could pop out if I even breathe,” said Melanie. “I used to love laughing and singing but I can’t do either of those things in case my ribs dislocate. Even coughing is dangerous.”
Melanie was forced to live in a halo brace for most of her life to prevent her being ‘internally decapitated’. In 2022 she became the first patient in the world to have her neck and spine fused in a life-saving operation in Barcelona. The procedure meant she was able to walk for the first time in her life but earlier this year she felt her ribs ‘popping’.
Surgeons discovered her ribs were dislocating during an operation on her original spinal T4 fusion which had come unstable. Melanie added: “During the operation surgeons saw that my ribs were dislocating all at the spine. They said they had never seen anything like it. I knew there was some popping but I didn’t know exactly what was causing it.
“The thoracic surgeon told me my insides looked like a car crash victim. I was in shock when they told me as I hadn’t done anything.” The initial surgery cost £25,000 but Melanie needs to raise a further £60,000 to have her ribs fused. She said: “I had to come home after the surgery because I didn’t have the money for the next operation.
“If I don’t have the operation soon the instability in my ribs will get worse and more ribs will probably dislocate. The surgeon said if more dislocate then the operations get more complex and it will affect my breathing for the rest of my life.”
So far Melanie has raised £20,000 after launching a GoFundMe appeal. She said: “I am so thankful to everybody for all the help so far. I feel awful having to ask for help again but it’s really desperate and I hope they will continue to donate and support the cause.
“I felt I was really close to living a normal life. I was walking a little bit, I was doing my studies and I was living independently. At the moment it feels like one step forward, two steps back but I will never give up. I have come this far and I’m determined to get my life back.”
