Monday, October 15, 2012
BFFs in NFF
by Maria Kathrina Lopez Yarza
October 15, 2012
Here’s a tumor. This also. This. This,” said Dr. Willy Lopez, my neurosurgeon, while pointing to the tumors in my brain from the Magnetic Resonance Imaging (MRI) scans. “You have a disorder called Neurofibromatosis,” he finally told us. It is such a long and tongue-twisting word that I often forget what the abbreviation NF stands for.
Neurofibromatosis is a neurological disorder that causes benign tumors to grow on nerves. These affect the brain, spinal cord, nerves, and skin. It can be inherited or it can happen because of a mutation in genes. And once you have it, you can pass it along to your children.
NF can be classified as Type 1 or Type 2. People with Neurofibromatosis Type 1 (NF1) develop varying numbers of bumps and spots that grow along the nerves or underneath the skin. Neurofibromatosis Type 2 (NF2) is a rare type of NF in wherein multiple tumors grow on the cranial and spinal cord.
NF1 occurs in approximately 1 in 3,000 births, while NF2 occurs less frequently in 1 out of 25,000 births worldwide and can be present among all racial groups affecting both sexes equally.
Even though treatments can be done to control the symptoms of NF like surgery to remove the tumors, radiation therapy and medicines — there is no known cure for it yet.
I AM NOT ALONE
As for me, I have both NF1 and NF2, though NF2 is more dominant on me.
Tragic? I don’t think so, I have seen more severe cases than mine and I still feel so blessed despite my condition.
When I was diagnosed with NF, I tried searching for NF support groups here in the Philippines. I wanted to meet a person with the same condition. I have joined NF groups online who are mostly based in the U.S and I told myself that someday, there would also be an NF support group in the Philippines to spread awareness in the country. I know that I am not the only Filipino who is inflicted with NF and I wanted to know them and let them know that they are not alone.
And then I got a text from Cecile Pesayco, 48. I was so thrilled when she told me she is living with NF1 as well. She saw my blog and contacted me and we became friends — NF friends that is! It feels so great to share your pains and the things you are going through with someone who actually experiences the same. And then we found out that we also share the same dream: to create an NF support group in the Philippines.
During my TV interview in 2007, I took that chance to call the attention of other Filipinos with NF. After watching it, Lola Linda Remigio immediately contacted me because all her four grandchildren are inflicted with NF2. I have met Nick, Marie, Ashley and Dondon — who I refer to as the “four turtles.’’
And then we met Jean from Bacolod. We joined forces and put up a Philippine online support group for Neurofibromatosis on Facebook. Our group started with less than 10 members. When I wrote something about it in this column in 2010, we were only 23, and to date, we are already 48 in the group.
We’re not sure though if that makes us happy or not because it also means that 48 persons are sick and suffering from NF. We are all happy that we were able to meet each other; yet, we are sad too knowing of the pains that each one of us encounters. People would often judge us because of our physical appearance; and so, one of our group’s goals is to disseminate information and make people aware of what NF is. Besides, ignorance is the reason why discrimination happens.
We made each other feel that we belong.
“Having NF made me feel so different and it makes me so distressful, but upon learning and knowing a couple of fellow Filipinos who, like myself, are thriving with NF, it changed the way I feel. I no longer treat myself as “so different.” Instead, I feel that having a NF is just a part of the imperfect life that each and every one of us (who are all imperfect) must deal and thrive with.” — Garry Fabros, 36
We influence each other.
“Malaki talaga naging influence ng group sa akin kasi dati lagi ko lang iniisip na malas ako dahil kakaiba ako lahat. Pero nung na-meet ko kayo, nakita ko na masayahin kayong mga tao, na kahit na may NF tayo, life must go on.” — Sherriemay Aguhob, 31
We learn from each other’s experiences.
“Dati nafi-feel ko na malas ako. Naiiyak ako kasi hindi ko magawa ang mga activities na gusto kong gawin. Naiinis ako dahil feeling ko naiiba ako sa lahat ng tao at hindi ako normal. Pero nung sumali ako dito sa group feel ko talaga na hindi ako naiiba at nakaka-relate ako sa mga sinasabi niyo. Sobrang nakakatulong talaga. Ngayon madami na tayo. Nagsasabihan ng mga problema. Nakakagaan ng loob lalo na kung alam mo na may nakakaintindi sa nararamdaman mo.” — Alex Cuartero, 13
We help each become a better person.
When we first met Danielle Jan Enteria, 14, she was a very shy kid and did not want to talk and make friends with us. But after that first meeting, she became livelier and always looks forward to our ‘meet-ups’.
We call our group Neurofibromatosis Friends or NFF. We all became friends because of NF.
“NFF is one of God’s medium para ma-comfort tayong lahat dahil sa simpleng pag share ng thoughts at worries sa result ng mga test, nakakapagbigay sa atin ito ng inspiration and idea kung ano ang dapat gawin. Sobra talaga ako natutuwa sa group na ito kasi kahit meron yung ibang bansa, iba pa rin kapag kapwa Pinoy ang kausap mo. Lumalakas ang loob namin na makakaya din ito ng anak namin.” – Maricres Abril, mother of Jorge who has an NF.
Ate Cecile shares, “I don’t really know the exact reason or the purpose why I have NF. But this I know, that God knows and feels my pains and that’s enough for me.” That’s exactly how I feel. Now I have realized that having both NF1 and NF2 is indeed a blessing because I can identify very well with how everyone in the group feels. Please support us and ‘Like’ our page, Neurofibromatosis Friends (Philippines) on Facebook http://www.facebook.com/nffphilippines