What is Neurofibromatosis
Neurofibromatosis is an autosomal dominant genetic disorder. Neurofibromatosis type I (NF-1), also known as von Recklinghausen syndrome, comprises, along with neurofibromatosis typ...
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How do we ever really understand the true meaning about neurofibromatosis type1,2,or 3? Doctors think they know what is best for us, but do they really know the damage it does to one single human beings life forever? It has truthfully ruined my life permanently! My mother died from this terrible disease almost 3 years ago in july. I have had this dreadful disease for over 15 years. Three doctors I used to have would not even do surgery. All they did was repeat MRI's, EEG'S, EMG'S, and even CAT scans. That is all my life revolves around is doctors and hospitals and even bloodwork. I even go to counciling for severe depression and because of this dreadful disease of NF2 I tried committing suicide twice. If it was not for my husband I would not be here today. I cannot stand being stuck in my house every day of my life. I can't work. I can't drive. I can only lift 5 pounds. If I lift more than that I will be paralyzed for the rest of my life! I have no social life outside of my home. Hardly any friends for moral support, or even my family. I am the black sheep of my family. The think I am just fine. HA! My sister and three of her children carry this same disease along with my aunt and her youngest son. Non of them even speak to me other than to run my life and tell me how to live. I don't live under their roof, and they don't pay my bills. Financially I have a hard enough time keeping up with my household bills let alone anything else. I had surgery in 2007 and they removed a tumor from my left ear that now has caused damage to my hearing and my balance.When they removed the tumor they said everything was successful with the removal of the tumor, but I say WRONG! I was able to work and walk just fine. I did not need a cane or wheelchair. Now its a priority for me to have a cane and wheelchair. Disability has denied me. I was on disability for 10 years, but when I got married I was dropped permanently. My neurologist said I shoulk=dn't have been taken off disability do to how serious my illnesses are. Now I battle back and forth with the social security office on a daily basis. Does this crap ever end? Do we ever get any relief. Probably not! My pain get so severe I can hardly stand it sometimes. I really feel my life is over. I am 34, but my body makes me feel like I am 65. I also suffer with epilepsy and high blood pressure. I do not think faith will help me now. I used to believe in miracles from god, but every single time I prayed my prayers were never answered. I can't believe how NF2 could take over my life for good. I have 2 doctors that are trying desperately to help me get my disability back. I also have a doctor that is working with me to get a wheelchair. Maybe someday I will get relief. Probably when it is to late. The president should help us who really need it. I live day to day wondering where the next meal is coming from and if I am going to have enough money to pay our next bill. Please don't let anyone ruin your life like the doctors did mine. I pray nobody has to go through this alone like I do. Nobody, and I mean nobody deserves NF1, 2, or type three. God bless you all!
Posted on 04/22/09, 06:04 pm |
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Please don't count on the president to make you happy or anyone else for that matter. I do not have the major health issues you do, but I do live with NF1 every day of my life. You need to find something you can do, find a purpose. I run to raise money for NF research through the Children's Tumor Foundation. I run marathons. the last one I ran in, there was a woman in a wheelchair who "ran" for part of the half marathon. There was a young man with a walker who was able to make one mile of the half marathon. If you don't want to participate in the running, you can cheer people on from the sidelines. Go to the CTF and look up the info on the endurance team. You have to find something you can do. 
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i am new to this but i do have nf1 and so do both of my children, and boy does it suck , i believe that you are right about the doctors and am trying to apply for disability, i guess i have had this all my life but was only diagnosed 1 yr. ago. it seems the pain in my arms gets worse everyday.my dad has this gene and so does my brother who is in denial, i hope you are no longer alone on this and hope you are happier now.
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It does suck not knowing whts gonna come next with this illness,how so many drs dont even try to help us,and the ones who do are so random..my whole life my nf was neglected because there were no NF drs in my town and the pcd told my mom it was just a skin disorder to not worry,I am the only child in my family with this..I got it from my dad..my son has a very mild case... I dont know the severity of mine.. I hope its mild.Keep fighting the ssi people it will take time.. but you have a right to your money if u cant wrk.
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You are not alone with NF, Many of us have the same stuggles as you do, I also lost my mom to NF1, She was only 34, I was 8. 2 of my brothers have NF1 also, one is mentally challenged and lives in a group home his twin had a brain tumor when he was 16, and they both have seizuires. only her oldest son got spared from this disease I got the Bone disease with my NF,
But you do have your husband also, I have never had a man tell me he is in love with me and made me a wife, yeah some guys have said Love you, but they say that to all their FRIENDS. I think you should contact a disabilty lawyer to see if they along with your neuroligist could get you back on disability, Also check with your state to see if they have medicaid or medicall assitance, I know there are some agencies that can help, maybe even the NF Inc can give you ideas. but also see if there is a support group for you to go find emitional help Also talk to your family, and talk to them about other things NOT just NF, ask your aunt about your mom what her favorite color was, what songs she liked growing up, dont make your life just about NF, try to smile each day as you look at your husband. DONT LET NF WIN. I know and understand the fears, the lonliness or emptiness you may feel at times, and not want to go on. But go on for your mother. you have to try to move forward, I try to move forward every day by volunteering, whether I just answer phones, or try to plan a picnic, (yeah it is hard to when I have to use a walker and going to need that DUMB wheelchair if MA pays for it. Please do not think I am trying to run your life or ruin it in anyway, but you can do it, You can also try to go to NF CHAT, Usually after 6:00 p.m. there are several people there that loves to help. None of us wants to let NF beat us, and we all need to vent once in awhile, here is the web site: http:// www.ctf.org/chat/ now if DS does not erase it they will be happy to chat. I go there when I can I am: tears_r_falling_1 but they just call me tears TC and hope to see you there soon hugss!!!
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If disability dropped you when you were married, you were probably receiving SSI which is a need based disability income as opposed to SSDI which is related to your work history.
I'm sorry you are having such a hard time. I am also a :mutant" I passed it on to my children before i knew what it was. My daughter just had a spinal fusion (age 13) from C-5 to T-9 to correct a 68 degree curve. She has a plexiform fibroma on her foot that makes her foot twice the size wrapping around the arch. She has ADD, is in the spectrum for autism and other learning disabilities. She also has a optic glioma in chiasm we are watching. She has been denied twice for need based disability coverage. They say she does not fit the catagory for "disabled" So we continue to fight. SSI does not consider NF under the disabilities "list" of impairments so you have to deal with each issue seperately....As suggested get a lawyer who specializes in SSI/SSDI appeal cases.
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I see you are in a lot of pain, both emotionalas well as physical. I have been in the CTF chat room for 5 years now, and one of our (family) members recently sent a detailed leter to President Obama, encouraging him to draw awareness to this terrible disorder.
Pat aka hellokitty in ctf.org/chat
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krkramer,
I don't mean to throw a monkey ranch in your post, but loosing FAITH is one of the worst things you can do. I know you are hurting but keep faith alive. I don't mean to compare misfourtunes, but i have NF1 and covered in bumps, and they only GET WORSE!!! At least your nf is not visiable. There are treatments used to shrink tumors and medications for your nerve pain. Be thankful you don't have a brain tumor. I don't mean to sound mean, but a lot of people have it worse than you. There are a lot of us that have NF1 and actually get turned down for jobs or date whatever because our physical appearance. You only battle inwardly NF right? Ask your doctors about radiation treatment. Please do not take this the wrong way. Just keep the faith , God has control and can work miracles...all he ask is that we keep the FAITH. YOU HAVE COME THIS FAR..DON'T LOSE FAITH NOW. We all have come this far by faith... Just keep your head up, i will be praying for you. I hope your disability is approved and things get better. Hope you have a good weekend.
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Have you tried to get an attorney? It might be a small fee BUT...YOU WILL GET WHAT YOU NEED. My dad had to get an attornry and now he has it. He has NF, COPD and emphazema. Keep trying until they give in. Best of luck to you.
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Marah,
You run marathons too? So do I. luv it!!! I have never had the courage to run a NF race. For some reason I am ashamed? I just don't like everyone knowing I have it. The other reason is I don't think we have one here in my state.. Any marathons coming up? Good Luck if you do. i love long miles. Sounds crazy but I love it. I can walk for hours on end.
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Last year I did the Portland marathon with the NF Endurance team. You an go to ctf.org and find loads of information on when and where these events ocurr. It does not mean that only people with NF are running marathons, but that you are with a team that is running for a cause, and the feeling of accpmplishment when you cross the finish line and have a medal placed around your neck makes all the effort worth it.
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