A life in exile
By Verdel Bishop
Charmaine Sahadeo lives with an incurable disfiguring disease called neurofibromatosis (NF). The genetic disease which causes tumours to grow everywhere on her body has plagued her life since she was a teenager. Now 34, Sahadeo’s battles continue and she now has to deal with a painful ruptured tumour on her upper right leg.
Neurofibromatosis is “neuro” for nerves, “fibromas” that can grow on the ends of nerves. Anywhere you have nerves on your body you can get the benign (noncancerous) tumours. NF are often seen as raised bumps on the skin. While these skin changes do not have serious medical consequences, they can affect a person’s appearance. Plexiform neurofibromas (which form under the skin or deeper in the body) are also benign tumours. However, these can grow quite large and can cause significant medical problems, and can affect the structure of nearby bone, skin and muscle. In some rarer cases the tumours may become cancerous. Surgery may be needed in some cases to remove tumours.
The tumours may also cause severe pain which in themselves are benign, but depending on their location in the body, can cause other problems such as curvature of the spine, short stature, epilepsy and speech problems. Some patients experience learning disabilities, behavioural problems, and vision and/or hearing loss. There is no cure for the disease. In adolescence, small rubbery lesions, known as neurofibromas start to appear.
It is a hereditary condition. If a parent has neurofibromatosis, then a child will have a 50 per cent of inheriting in, but the majority of cases are a result of a mutation of the gene. Sahadeo’s mother also has NF. Sahadeo is concerned that she has passed the disorder on to her two boys aged 14 and 11. While Sahadeo has faced many challenges over the years and her battles continue; she is unemployed and is now burdened by her worsened condition. She is coping with the pain of the ruptured tumour and prays that it doesn’t get worse. Sahadeo is also concerned that people are not aware or educated enough about the condition. She said people with NF continue to suffer in silence, in most cases with little or no support.
As if having to live with the pain of NF is not enough, Sahadeo is also virtually homeless. Her Diego Martin home caved in four years ago due to heavy rainfalls and she now lives with her mother in a dilapidated shack.
“It’s hard. I try to cope. I know I look different but I try not to let it bother me and I do what I have to do. I feel like I’m scorned especially when I have to get a taxi it could be difficult because people avoid being close. People stare but I don’t take them on; I have been harassed in the past. I spend most of my time away from the public. It is hard when there is a crowd and everybody starts to laugh or talk about you. But I know that a lot of people don’t know or understand what it is, so sometimes I don’t take it on too much. My children are supportive and they help me a lot. They are not ashamed of me but I still don’t go to their school; I have their teacher’s number so I call her when I need to,” Sahadeo said.
“I feel a lot of discomfort with this condition. It is so painful. Sometimes it feels like something is jabbing into my leg. I can not touch it; sometimes I get pain right through the day. Sometimes when my leg bumps into something by accident I’m in a lot of pain; I have to be very careful because the upper part of the leg got infected. I don’t know how it got infected. I had surgery about three or four years ago to remove two of the tumours but they came back. I need to have surgery again. There is no cure, the only solution is to cut but they will grow back.”
Sahadeo recalled: “When I was 15 I started to see little bumps but it took a while to spread all over my body. So I saw the signs and that is how I figured out I had it. My mother has it but hers not so bad. I have two children and I am always worried that they would end up with it. I always watch them and watch their skin to make sure there are no bumps. There is really no other way for me to tell unless I see the bumps.”
“I need a job but no one will want to hire me. And besides, I am in a lot of pain anyway, but still, I will do what I have to do. Sometimes I get angry with the system. But I still get some assistance. I get a disability grant from the government and I get separate assistance for the children and I have a food card. I need a home,” Sahadeo said.
The Jericho Project has come to Sahadeo’s assistance many times in the past. For months the chariman of the Jericho Project Phillip Alexander, has been championing Sahadeo’s cause, even using Facebook to garner support and compassion for Sahadeo. He said Sahadeo is in need of financial and emotional support.
“Every year the Jericho Project helps orphans and one of the things we are going to discuss at our next meeting is the creation of an association for people with Charmaine’s condition. They need to access better representation and ways to ease their plight. Since I have met Charmaine I have also came into contact with two other people with this condition and I know the difficulty they face. I am aware that the condition also often leads to social isolation. In Charmaine’s case we have come a long way in getting help for her. The Housing Development Corporation has agreed to provide her with a house. I have spoken with Housing Minister Roodal Moonilal and the Housing Develop Corporation (HDC) chairman Rabindra Moonan and they have agreed to give Charmaine a home. Charmaine lives in squalid conditions in a shack with her mother and she is in a lot of pain. Her mother also has the condition. Things are moving swiftly. Charmaine’s case officer is Myrtle Joseph of the HDC. Charmaine is hoping to get a house in Diego Martin as her children go to school in Diego Martin and it would be difficult to have to move them. Also, transportation is a problem because she is scorned and it is not easy getting to a taxi,” Alexander said.
To assist Charmaine or to get involved with Jericho Project call 682-2110 or at firstname.lastname@example.org