Sherisse Alexander

RARE DISEASE: Former model and beauty queen Sherisse Alexander.

FOR the past seven years, former model and beauty queen Sherisse Alexander has been living in the shadow of a rare disease you probably never heard of - plexiform neurofibroma. But she is not about to give up. In fact following her diagnosis in 2015 she launched #TheNerveToFight campaign to highlight her battle against plexiform neurofibroma which is a debilitating and progressive disease.

To help finance much-needed medical treatment, the courageous 29-year-old will launch her first book, a collection of spoken word poetry Metaphorically Speaking at an upcoming book launch/fundraiser on June 26. The event will feature a DJ and live local entertainment.

Plexiform neurofibromas are larger, extensive tumours that grow from nerves anywhere in the body. The medical condition causes severe pain, limited mobility, drastic weight loss and a range of other medical problems. There is no cure.

Early this year, Alexander went to Johns Hopkins Hospital in Maryland, USA which referred her to the National Institutes of Health — a US federal agency responsible for conducting and supporting medical research. She was accepted as an outpatient and underwent blood tests, PET scans, an MRI and a biopsy. However, the NIH was only able to do diagnostic and investigative work and because of a lack of funds Alexander had no other option than to return home.

Surgery to remove some of the tumours was put off, instead she was instructed to strengthen her body, gain weight and work on her core muscles with the help of physiotherapy. Despite a few positive developments, Alexander has experienced some setbacks; while massaging the area around her knee a few weeks ago, she discovered a lump that was not there before.

“Even though I am doing things to correct what has gone wrong, the illness is still there. It’s not as if physical therapy is removing plexiform neurofibroma - it’s still there and it’s still progressing,”she says.

Alexander’s tumours start from her lower back area and extend to the bottom of her left foot. Her sciatic nerve is also affected. The largest growth is in her inner left calf area. Doctors are perplexed as to why the nerves are doing what they’re doing and why her left side is so badly affected Alexander is currently on crutches and is not able to walk on her own. Extreme temperatures also have a negative impact on persons with nerve conditions.

“I am really struggling now that the rainy season is here and we have chilly weather. The level of pain has intensified. The tablets slightly ease the pain but it hasn’t removed it. I still have to lie down for the majority of the day whereas before I was able to walk around and make a little meal. To be honest, some days I can barely get out of bed but I’m persevering. I’m hopeful that it will get better,” she says.

Surgical intervention

For now, Alexander’s hopes rest in surgical intervention to debulk as many tumours as possible, in so doing, it will free up those areas where tumours may be interacting in and around muscles. The removal of tumours will give her a sense of normalcy and increase her mobility and functionality on the left side of her body, it would also provide some relief from the pain and discomfort that she lives with on a constant basis. The cost of the surgery to remove the tumours is approximately TT$2 million and can only be done abroad. Every month Alexander’s family and team of supporters organise fundraisers to help offset medical expenses.

In the meantime, the former St Joseph’s Convent, San Fernando pupil keeps tabs on new developments as it relates to her medical condition in the event that if the smallest glimmer of hope appears on the horizon, she can seize it. Alexander is her own health advocate, she doesn’t leave it up to doctors to tell her what’s happening to her, she views it as a personal responsibility to be informed and involved in her health care.

“I am very aware of any new growths and pains that I experience. In the initial phases of my illness I neglected to pay attention to the pains and swelling. It was only when things had advanced that I became alert to the fact that something was wrong,” she says.

The past few months brought one positive development that she is especially proud of; her book Metaphorically Speaking — was finally published.

The book has special meaning for Alexander. While she was abroad for medical treatment, talk of cancer began circulating among her doctors who were puzzled by the rapid growth of her tumours and the intensity of her pain.

The doctors even discussed amputating her left leg.

“It shook me; cancer didn’t scare me as much as the thought of amputation. I started thinking about my life and the legacy I wanted to leave behind. I know that I want to be remembered for something outside of my illness so my mind ran on something I’m passionate about - my spoken word poetry,” she says.

Metaphorically Speaking covers all aspects of her life, including her life before her diagnosis. Her book launch will be done in classic Sherisse style: she will do some readings from her book and there will be live entertainment, finger foods and drinks will also be on sale. All proceeds will go towards her medical treatment.

The book launch/fundraiser will be held at the Plaisance Park Regional Complex on June 26. Ticket information is available on The Nerve to Fight- Sherisse C Alexander Facebook page. Additionally those wishing to make monetary donations to assist Alexander with her medical expenses can make contributions to her Unit Trust Corporation: account #: 6139894-002, or RBC, account #: 110000003659335.

“Some have a mindset that if they can’t give plenty- they won’t give at all. But my mom always said ‘one, one drop will fill the bucket’, meaning that every little bit counts - it’s the little bit by little bit that adds up to make a whole. So I would like to encourage people to just give, no matter how big or little - every dollar counts at this stage and it will go a long way,” says Alexander.

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