Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
Being 20 years old, marriage and children will be on the horizon at some point in the near future. I know that my disease will affect my children. I have questions but not enough answers. I've decided to do a research paper for my English class on my disease to possibly find out more answers. Unbeknown to me, my teacher would make it necessary for the class to interview someone on the topic of their paper. Since I obviously can not interview myself I was wondering if anyone would be so kind as to agree to an interview? Remember if you are uncomfortable with a question you don't have to answer it and you do not have to put your full name. THANK YOU SO MUCH.
Neurofibromatosis or Von Recklinghausen Disease
1. What is your name and age?
2. What race are you?
3. When did you first discover you had Neurofibromatosis?
4. What were the first symptoms?
5. How has Neurofibromatosis affected the way you live?
6. In what ways do you cope with it?
7. Do you have children of your own or have ever wanted children of your own?
8. If you did not have this disease what would be different about your life?
Neurofibromatosis or Von Recklinghausen Disease
1. What is your name and age?
2. What race are you?
3. When did you first discover you had Neurofibromatosis?
4. What were the first symptoms?
5. How has Neurofibromatosis affected the way you live?
6. In what ways do you cope with it?
7. Do you have children of your own or have ever wanted children of your own?
8. If you did not have this disease what would be different about your life?
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
My Name is Sheetal and i am 30 years old,
I am an Indian.
I have black pigmentation on my body since i was 4 years old,And when i was 19-20 years old i first discovered tumors(on shoulder,on chickbone)then it started growing on my body.
Well its affected me in many ways..I hve lost my confidence..and cannot do the things or wear the clothes which i like..
I am unmarried..dont want to pass this to my children.. so i dnt want childrens.(Helpless)..if i was not suffereing from this
I would have been married and had my own child..
2. What race are you?-- White
3. When did you first discover you had Neurofibromatosis? -- 26
4. What were the first symptoms?-- discovered tumors inside that had to be removed, but I did not know at the time it was NF the Dr I went to at the time was not clear on what he was removing he was just someone my family used a general surgeon. I thought they where cysts. until the ones on the outside started growing and then he realized and sat me down and told me.
5. How has Neurofibromatosis affected the way you live?-- Just that I have to get them removed when they bother me and that they are growing more now.
6. In what ways do you cope with it?-- I just try to keep positive that's all I can do
7. Do you have children of your own or have ever wanted children of your own?-- I have two children 18 and 20 both do not have it.
8. If you did not have this disease what would be different about your life? --I would feel more positive about myself not so self conscious about the way I look I would like myself more. Its more of a self image thing with me and I have a mild case.
2.Hispanic
3.ten I think...
4.had a huge tumor over my left eye when I was about..4 it was removed..when I was 5 ..I am told...I have no memory of my younger days..dont really remember anything or any one B4 age 10..
5. It has prevented me from joining the military..having self confidence ...my relationship with others...I keep people at a distance..even family....
6. I try 2 4 get about it...I drink helps the pain from some of these tumors..
7. I wanted kids ..B4 I found out about theses things..now I dont ever want any kids...
8. Everything...
2. white
3. 9months old is when i was diagnosed and 7yrs old when my parents told me i have neurofibromatosis
4. left eye bulging out and cafe-au-lait spots
5. lost my left eye when i was 4yrs old due to a tumor on the optic nerve. got teased in school because of it
6. i stay positive and not let it bother me
7. i have one child and she doesnt have it
8. i would have both eyes instead of one
1. What is your name and age? Alex 26
2. What race are you? german from Russia/norwigen/sweedish/ german
3. When did you first discover you had Neurofibromatosis? I was told when I was 7. My parents knew when I was born.
4. What were the first symptoms? learning difficulties especially with math
5. How has Neurofibromatosis affected the way you live? I have to work harder to learn things that come easy to other people.
6. In what ways do you cope with it? I don't understand this question. Please clarify.
7. Do you have children of your own or have ever wanted children of your own? My husband and I are currently trying for our first.
8. If you did not have this disease what would be different about your life? Id have had an easier time in school. other than that I can only guess. My childhood was rough I came out strong. I wouldn't worry about dying young. Passing it on to my kids who could be more severely afflicted..
2. What race are you? White
3. When did you first discover you had Neurofibromatosis? 29
4. What were the first symptoms? When I was 16 I had a large tumor on my wrist, but that was removed and not diagnosed as NF. When I was 28 I had a small tumor on my butt, doc removed it and was diagnosed then.
5. How has Neurofibromatosis affected the way you live? I feel people meet me and only see the bumps. I now have several on my face, body, arms and neck. I have a few on my legs and feet. I also get horrible headaches that I think are connected, the bumps itch a lot and other medical issues. I hate it.
6. In what ways do you cope with it? I have had several bumps removed when they are painful. But I have to talk doctors into it.
7. Do you have children of your own or have ever wanted children of your own? I have 4 of them, 2 with, and 2 without.
8. If you did not have this disease what would be different about your life? I would worry a LOT less about my appearance.
2. What race are you?white
3. When did you first discover you had Neurofibromatosis? 1 and a half
4. What were the first symptoms?cafe-au-lait spots
5. How has Neurofibromatosis affected the way you live?alot im blind in my right which effects my hand- eye depth and many more
6. In what ways do you cope with it?I just say i cant change so i guess i have to live with it
7. Do you have children of your own or have ever wanted children of your own?I dont and im undecided i dont want them to go through thing im going through
8. If you did not have this disease what would be different about your life? I would have more confidence