Sherisse Alexander discusses her rare medical condition with Guardian Media.

Sherisse Alexander’s day begins with prayers and a handful of pills. For the last seven years, the 28-year-old from the sleepy central community of Tortuga, has been battling a rare medical condition which at one time left local doctors stumped.

In an interview with Guardian Media, she said, “When I went to the public hospital, they had to send me back home for probably two to three weeks to do their own research and to liaise with other doctors to try to diagnose me. They did not know what they were dealing with.”

Alexander’s debilitating condition is known as Plexiform Neurofibroma. According to an online medical journal, Plexiform Neurofibroma is an uncommon variant of neurofibroma, a benign tumour of peripheral nerves, arising from a proliferation of all neural elements. These tumours are at significant risk of eventual malignant transformation.

She explained, “The nerves themselves form tumours, or in layman’s terms lumps or swellings. These lumps lead to a lot of unimaginable pain.”

Alexander said research and medical consultations suggest the disorder, while incurable currently, can be treated through surgery. But as her family struggles to raise the funds to afford her care, Alexander is forced to spend her days struggling with even the simplest of tasks.

“I’m underweight right now. At the age 28, I’m 70 pounds and it’s a struggle to stay at 70 pounds. Slowly, mobility is starting to become a major issue for me. I have a lot of problems standing for long periods of time, as well as sitting for long periods of time because it has led to lower disk bulging. I’m on crutches now and it’s because of the fact that I can’t straighten my left knee.”

Holding back the tears, the UWI graduate said losing her independence has been one of the most heartbreaking things she has had to endure.

But while she battles the physical pain, it is the mental anguish that has taken the most toll.

“Sometimes I have this out of body experience where I can’t even recognise myself and to me that’s the most difficult thing, to look at yourself in the mirror or just live your life feeling like you are not you.”

Alexander is currently with relatives in the US. The move was meant to bring her closer to treatment at the John Hopkins Hospital.

However, money from fundraisers are not nearly enough to cover her estimated US$200,000 medical bill. Undaunted, her family continues to have regular events such as pholourie, cakes and garage sales.

Alexander said recent medical visits suggest that her condition is not improving and she now faces the grim prospect of having amputations. She is now appealing to members of the public for assistance to help her afford the necessary treatment.

Donations can be made to the following accounts: UTC: 6139894-002, RBC:110000003659335

Alexander can also be contacted at 317-7127.