True Life Diary | I Have NF

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True Life Diary | I Have NF

Posted 4/12/10
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Get an up close and personal view of Bekha's life at home after her episode finished shooting.

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Alyson (1/25/2013 10:55:22 AM)

have nf2 and not a single person in my family has it!

K8TDiD (6/30/2010 2:23:02 PM)

also, NF is not always a fatal disease. only if the fibromas grown in places where it can effect the organs and in some very rare cases, the fibromas become cancerous. but it's not like NF is the only genetic disease out there. people with these mild defects should be able to live a normal life just as anyone who does not have some sort of birth defect.

K8TDiD (6/30/2010 2:17:27 PM)

well, first of all. you should do your research before you start rattling off nonsense. you know that 1 in every 4 children are born with some sort of birth defect, did you not? I have NF1 and it was a spontaneous mutation in my genes, meaning i was the first in my family to have it. these things happen. and there is only a 50/50 chance that when i have children i will pass it on. and i WILL have children. i'm engaged to an amazing guy that i've been dating for 3 years and i'm not going to let the chance of passing it on deprive me of experiencing the joy of bringing a child into this world. my case is mild, compared to the three chosen for the True Life. they wanted to choose people with the worst cases of the disease to give the world a look at how effective it really can be on someone. but if your lucky like me, and your case is mild, then you don't let it hold you back from anything. and nor did the families on this specific episode of True Life. they live happy lives and don't let it hold them back. so before the next time you decide to criticise someones life, make sure you know something about it.

SML (6/29/2010 3:33:55 PM)

Before making harsh statements and judgments about the morality of others, perhaps you should try a little research. HALF of all cases of NF are the result of a spontaneous mutation. (This can be verified at this link: http://www.ctf.org/Living-with-NF/what-is-nf.html). While having an affected parent may incrase one's chances SLIGHTLY of getting NF, having two non-affected parents does not eliminate it. So by your statement, it is "irresponsible" for anyone to have children, ever, because they MIGHT be sick. Its not as if these parents found out that they were having a child and purposely did things to harm them. If we were discussing something like Fetal Alcohol Syndrome, I would wholeheartedly agree that it was selfishness and irresponsibility that caused the child's affliction, but NF doesn't work that way.

DasiyLuv (6/8/2010 1:38:25 PM)

It is very irresponsable for these parents to be having kids, knowing they could potentially have this terrible disease. All the pain they are inflicting on their children should and is in my book, considered child abuse. You ppl should be ashamed of yourselves!!

Jazmin Sepulveda (5/4/2010 9:01:01 AM)

Hi I have NF1 I was diagonse when I was 2 and we dont know what side of my family carries the gene with NF. I know the feeling I had sugurey in one of my gums when i was 11 has it was growing it was painful, and now I have a sm fibroma on my heada little painful with my headache but cant do anything about cuz its connected to my nevers. I have a 4 yr old that has NF1 I just hope he dosent go thru what i went thru...I felt very alone in this I didnt realize how many people were affected by this..

crybaby27 (4/26/2010 8:54:04 PM)

taijaschquan@yahoo.com sorri

crybaby27 (4/26/2010 8:53:37 PM)

taijascquan@yahoo.com email me ppl so we can share our stories and thoughts of nf cuz my self esteem is very low i dont even like my self...tear drpsz

crybaby27 (4/26/2010 8:41:47 PM)

i have the nf patches meaning i have an lot of birthmarks but there not bubble up but my mom one is it runs on my grandpa side of the family out of 5 kids she is the only thats has the nf didnt know that many ppl was goin to comment on this issue wish i cud talk to some of u on how yall cope with it

JT (4/23/2010 7:34:36 PM)

Thanks MTV, Bekah and everyone else for sharing your stories and bringing the rest of the country the awarness of NF and how it affects so many in this country. My name is Todd and I am in my 30's. I have lived with NF ever since I was 7 yrs old, officially diagnoised when I was 12. My doctors have told me I have both Type 1 and 2 of NF. I have 100's of fibromas all over my body, all of them underneath the skin. Mine ache and burn (aka "itch") a lot. I really didn't start having any major issues until I hit 18. My first surgery was on my left leg, I was having trouble sitting at schhol my jr. year of highschool, that summer before my senior year I had the surgery where they removed 40 fibromas of various sizes out of that leg. I also had a very large fibroma in the back of that leg they couldn't remove due to the fact it was so nerve involved. Unfortunately by them messing with that in the back of my leg it caused nerve damage. I slowly lost the ability in both of my feet to move them up and down I have limited sensitivity in my feet which can cause me problems if there is any type of pressure point im not feeling. I had to get braces for my feet so I have the ability to walk so i dont drag my feet. The next two surgeries I had were on my back and neck. 4 years apart. I almost died from the first neck surgery due to getting spinal menegytist after the surgery. They removed some that were pressing against my spine and my doctor wrapped my spine so that if any grew back theyd grow away from it. The next neck surgery I had in 1999 another had grown this one and grown near my spinal cord. I was devistated, I searched for a doctor to help me after my current doctor said "theres nothing I could do for you" I found a doctor who took the chance and she saved my life. She was able to remove the fibroma that was wrapped into my spinal cord without damage. I've been very blessed in my fight with NF, I can relate to all three cases on this True Life episode and Im sure those of you thats posted here with you're struggles. All 3 of you in this episode are true inspirations. Thanks for sharing your stories with us. Stay Strong and Keep Fighting! =)

Manda (4/22/2010 8:36:53 PM)

My name is Amanda I am 22 years old and am the only person in my family with nf1. I have had it all my life. When i seen this episode it brought me to tears because i can realte to all three young adults and new how hard it was growing up with this. The hardest part was my mother new nothing about it and didnt know what to exspect as i got older. I have had 3 surgerys on my right arm causeing a bone in my lower arm to die witch the had to be removed . yes my arm still has movement and can be use but the older i get the more pain i get..I have a 2 year old son that i prey everyday dose not get nf1 or nf2.. I dont want him to go through what i went through. I want to thank mtv for telling these 3 young adults there stories it helped me understand more all 3 of you are an inspiration amanda

Brandi Marley (4/19/2010 4:41:23 PM)

Hi MTV, Thank you so much for telling these teens stories about Life with Neurofibromatosis. I am 28 years old and I have NF1. I am organizing a walk in KC MO in June trying to raise money for research for a cure for NF and raise awareness. I know several people who have never heard of NF. I think more people need to be aware of NF so we can find a cure or something to shrink the tumors. Thanks to the teens who shared their story :) Brandi

Melanie J Young (4/18/2010 10:54:29 AM)

Ive had nf all my life also. Mine also got really really bad after my 3 preganicies also. Now i have a tumor the size of a football in my right leg an cant seem to get medicaid or health insurance to get it removed im in constant pain. i just have no clue on what to do right now

libertyeyes (4/17/2010 8:06:55 PM)

Thank you MTV for airing this episode of True Life. I think the world needs more information about the disease. I am 38 and have shown signs of nf1 my entire life. It worsened when I hit puberty, pregnancy with my daughter and as I've gotten older. I feel depressed about it on a daily basis and I suffer from back pain on a daily basis and many of my "bumps" itch a lot. I do not have a regular doctor to go to for treatment. Doctors in my area are not familiar with it. I have a 16 year old daughter that luckily does not have it. I hope and pary for a cure every day. My mother also has nf1 but didn't show any signs until she turned 30 years old. My grandmother had it as well. I fear growing older because I know that it will only get worse as I age. I would love to know about any current available treatments to stop the growth or minimize the appearance of them. Thanks to everyone for sharing their stories. Libby

mariluz (4/16/2010 1:48:58 PM)

Bekha, you're an inspiration to us all.

mommy_of_3 (4/15/2010 6:08:38 PM)

Hi my name is Amber and i had a grandmother that past away do to NF by the time she found out she had it,it was to late and when i watched this story of these kids that have it,it really made me think of the pain and the things my grandmother went through...I really feel for them...My prayers and best of wishes go out to the kids and there families for being so brave....best of luck to you all on your journey through life

bonecrusher44 (4/15/2010 5:58:00 PM)

bekha,your story has brought me to tears as such a young woman is dealing with so much at a young age. your spirit, bravery ,and courage, is truly inspirational,i wish you the very best in all your endevors.and continued recovery and improvment you deserve the best ...go girl!!!..and id like to thank mtv for making people aware of stories like yours

Gamma (4/14/2010 7:14:05 PM)

Puberty is when it really started getting bad for me. my pregnancies and birth cntrol also made it worse.

Gamma (4/14/2010 7:10:22 PM)

I am the 2nd generation with NF. My father was the first, then my older sister, then next it was my turn, then my youngest son. I was diagnosed at a few months old, my son before he was a year old. I had my first tumor removed at the age of 13..I did not tell anyone at shcool because the tumor engulfed my whole breast, which had to be removed. I have since had almost 100 removed. I have never had one return, unlike many I have had contact with. I have lots of "bumps" on my face and torso and sometimes am very self-conscious about them. NF really stinks however, I have an awesome family and GREAT friends who love and accept me "bumps" and all. My Bff has had to take me to a few of my surgerys beause my hubby was not able to take me. I hope his show will make kids aware of what their classmates go thru. I teach Middle School and they ask quesions. I taught 1st grade for several years, and one of my students old me that I have been kissed by GOD alot,,, then she started to try and count my "bumps". GOD love the little ones.

Diana D Williams (4/14/2010 4:18:27 PM)

I AM GOING TO PRAY FOR ALL THESE YOUNG PEOPLE,BECAUSE I HAVE FAITH IN GOD AND I KNOW HE IS GOING TO BE WITH THEM ,THROUGH ALL THERE OPERATIONS AND THERE JOURNEYS SO I SEND THEM LOVE AND MY PRAYERS.JUST IN THE LORD WITH ALL YOUR MIGHT.

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