Neurofibromatosis type 1 patient has plans of getting a new face
After Neurofibromatosis Type 1 has caused her face to deteriorate for 48 years, Christina Acosta is trying to save up for a new face.
The 50-year-old single mother from California was diagnosed with the incurable condition before the age of two and has been battling the rare condition ever since.
In addition to the physical affects the condition has caused to her face, small tumors grow all over her body as a result of NF1.
She also endures a large amount of pain every day and is hearing impaired in her left ear.
Christina said: “I get really bad headaches, my body is in pain all the time and I’m always in and out of the hospital.”
“I get throbbing pain where the tumors are and it hurts even if I or someone else slightly touches my face.”
“The constant change is so difficult to deal with. I can get a tumor removed and then another one can develop. And it’s so difficult to accept the fact that there’s no cure for this.”
Symptoms of NF1 started to slowly show in Christina’s left eye when she was a toddler and the condition continued to progressed throughout her childhood.
By the time she was in her 30’s, it started to worsen, as she noticed she was developing tumors in new places on her body.
Due to the severity of the rare condition, Christina no longer works full-time. She is working as a telemarketer from home, while her original intention was to work in medical billing.
Christina said: “After I turned 30, I started growing tumors in various different spots on my body and it started becoming even more difficult to live my life.”
“It’s difficult having this condition as an adult because people don’t realize that I’m intelligent. They see me as challenged.”
“It has prevented me from keeping a steady full-time job and being able to take care of my daughter in the way that I want to.”
“I try so hard to do so much, but people never accept me for who I am. Even if I can get to a point where it’s not that difficult, it will eventually get difficult again.”
In addition to the side effects she already had to experience her whole life, Christina completely lost her ability to see out of her left eye during a surgery that went wrong.
As someone who already had vision problems in her left eye and a rare condition that had already caused her life so much inconvenience, losing the eye completely made everything worse for Christina.
Now she has to go through life much more cautiously as a result of the loss in sight.
Christina said: “I already had so many side effects from the NF1. I had bad vision in that eye my entire life, but I never thought I’d have to worry about losing it.
“Losing my eye was a very big change for me. Ever since then, I’ve been bumping into people when turning around because I can’t see them right away. I wouldn’t be able to see if someone was sneaking up behind me. I have to be extra careful going through life.”
“I am able to drive, but I have to continuously be turning my head to make sure I see things.”
Christina is trying to raise $30,000 for two separate operations – one in which her eyelid would be reshaped and another in which her facial figure would be reconstructed. She has set up fundraiser on web platforms GoFundMe and YouCaring in an effort to raise the money.
She has received many tumor-removal surgeries that were covered by insurance, but would have to pay out of pocket for operations such as these because they are considered cosmetic.
The procedures are very important to Christina because she believes they would cause others to accept her more and lessen the teasing that her eight-year-old daughter experiences at school due to her appearance.
As part of the facial reconstruction, the doctor would also zap any tumors growing on her face with an electrical current so that they do not grow back.
Christina said: “I know I’ll never look perfect, but I just want to look presentable. I want my condition to at least be less visible.”
“I don’t want my daughter to deal with getting teased because of the way I look anymore.”
“Her classmates are always asking things like, ‘why does your mom look like that’ and ‘what’s wrong with her.”
NF1 is caused by a defect in the gene and affects 1 in 3,000 people. Carriers of the condition have a 50 percent of chance of passing it on. However, approximately 50 percent of carriers did not inherit it, according to Diana Haberkamp, executive director of Neurofibromatosis Midwest.
Not everyone with NF1 has noticeable physical differences, Diana added. Some have tumors internally and others have no tumors at all. However, NF1 can cause additional conditions.
Diana said: “How each patient is affected varies greatly. Approximately 50 percent of people with NF1 have learning disabilities. A host of other conditions are more common in NF1 than in non-affected people. For instance — bone abnormalities, scoliosis, poorer muscle tone, poorer fine and gross motor skills, seizures, vascular tissues, speech issues, cancers and obviously depression.”
“Some of the most difficult struggles of the condition are finding good care and knowledgeable doctors as well as the lack of awareness and understanding by the public. The biggest physical struggle is the large plexiform tumors.”
“I don’t think there will be a cure until we can alter a person’s genetic makeup, but I think there will be newly discovered treatments to control or slow down some of the complications.”