Monday, May 12, 2014
Beautiful despite the imperfections
“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” − Psalm 139:14
When I was a child, I was diagnosed with various illnesses and conditions, which we later found out to be just one kind of disorder – Neurofibromatosis (NF).
NF is a neurological disorder and causes benign tumors to grow on nerves that can affect many parts of the body, including the brain, spinal cord, nerves, skin, and other body systems. It can be inherited and can be caused by a mutation in genes. Once you have it, you can pass it on to your children.
I was diagnosed with NF type 2 (NF2) in 2004. NF2 the rare type of NF, occurring in about one in 35,000 to 40,000 people worldwide. The distinguishing feature of NF2 is tumors that grow on the eighth cranial nerve in both ears, commonly causing deafness, and severe balance and vision problems.
According to the National Institute of Neurological Disorders and Stroke, signs of NF2 may be present in childhood but are so subtle that they can be overlooked, especially in children who don’t have a family history of the disorder. The Institute also said that symptoms of NF2 may only be noticed between 18 and 22 years of age. I was 21 when I was diagnosed with NF2. Later on, we found out that I have a mild case of NF type 1 (NF1) as well.
NF1 is the more common form of NF, occurring in one in 3,000 to 4,000 people. Common features of NF1 include café-au-lait spots, freckles, neurofibromas in or under the skin and Lisch nodules on the iris of the eye. Most cases of NF1 are mild to moderate. Some people with NF1 can develop complications like skeletal abnormalities, plexiform neurofibromas and optic gliomas.
Another type of NF is called Schwannomatosis. The distinguishing feature of this is the development of multiple schwannomas (tumor of the tissue that covers the nerves) everywhere in the body except on the vestibular nerve. Anyone with schwannomatosis experiences some degree of pain − mild, significant, severe and disabling. Studies indicate that Schwannomatosis likely occurs in about one in 40,000 people, similar to NF2.
NF affects both sexes equally and has no particular racial, geographic or ethnic distribution. Therefore, NF can appear in any family.
Even though treatments can be done to control the symptoms of NF like surgery to remove the tumors, radiation therapy, medicines and therapies – there is no known cure for it yet.
MAY IS NF AWARENESS MONTH
I met Jorge and Nys during the annual gathering of our support group called Neurofibromatosis Friends (NFF). Like any child, they were both silent at first but after a while, they instantly clicked and was all over the place – playing and chatting. We weren’t able to get a good picture of them together because they kept on laughing and fooling around. These kids are fun to watch because despite being different from others, they are able to enjoy like everyone else.
In 2012, I met Maricres Abril whose son Jorge Bartholomew has NF1. He was diagnosed with it when he was two. As he was growing up, he started asking questions about why he is different from other kids. When he turned four, he asked his mom, “Why do I have ‘black-black’ (that’s what he calls his café-au-lait spots) and my baby brother doesn’t?” It was really painful for Maricres every time Jorge asked him questions like that but she never failed to remind him how special he was.
Although he has yet to grasp the full meaning of what NF is, Jorge is now aware of his sickness because he has more medicines and hospital visits than other kids his age. And despite those numerous tests and procedures, he is a very brave and cheerful kid.
It’s just sad whenever he gets bullied by his classmates because of his looks. Adults should teach their kids compassion and understanding so they can play with kids with conditions without hurting them.
Maricres shares, “Jorge is an incoming Grade 3 student in a mainstream school. The start of every school year is like God’s affirmation that everything will be alright.”
My NF friend Mai Mai Piega, on the other hand, is a mother of two. Although her son doesn’t have any signs of NF, her youngest daughter Maraiah “Nys” Anai has numerous café-au-lait spots all over her body. She has not been properly diagnosed by a doctor due to financial constraints, but because of the evident signs and symptoms —most of her family members have been diagnosed with NF1—they all believe that she inherited it too.
One time, when Nys and the family were praying together, she suddenly stopped when her name was mentioned and asked, “Do I have NF as well?” Nys was four when she learned about it. It has affected her both physically and emotionally but with prayers and love from her family, the eight-year-old girl is able to cope with her struggles.
At her birthday last April, instead of wishing for presents and things, she prayed to God to free her family from financial difficulties so that her mom can pay for her tuition fee this coming school year. She adores her family members and never fails to show them affection. Last Christmas, she wrote a letter to Santa Claus, asking him for the gift of complete healing for her, her family and her mom’s NF friends.
Nys is sweet, friendly and cheerful like most kids her age but I’m so amazed at how this little girl can easily give out love, compassion and understanding.
“Every time she hears people talking, looking, pointing and whispering about me, she would hold me tight, hug me, kiss me and say ‘I love you mommy numerous times,’” Mai Mai shares.
During our gathering, I also got to meet 15-year-old Jennie Odejar in person. Prior to that, we had already been talking and exchange messages. She has grown weaker and is now on a wheelchair.
When Jennie was four years old, they noticed a bulging mass on her right shoulder going all the way to her nape. Her right arm was getting weaker. She was then diagnosed with NF1. She quit school last year because her health started deteriorating and she couldn’t move her arms and feet anymore.
“Pangarap ko lang na magkaroon na ng gamot para sa NF,” Jennie said.
Among the 96 million people in the Philippines, how many are aware of NF? May is NF Awareness Month. Know all about it and share the information to at least one person. In this way, we can make NF known and increase the possibility of finding a cure for it. Support our group and ‘like’ our page www.facebook.com/nffphilippines.