Ask Kate! Can I be a "carrier" of neurofibromatosis?

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Childrens Tumor Foundation

Childrens Tumor Foundation

Күн бұрын

Пікірлер: 13
@071949
@071949 5 жыл бұрын
Hi Kate, As always, a very interesting and informative video. Thank you! My mother---who was born in 1909---had NF1, I have it, as did my daughter Jessica. Not sure when my NF1 was diagnosed, but by my 20s I developed tumors on my chest, back, and forearms. No complications, just the cosmetic issue. My daughter's NF1 was diagnosed very early. Sad to say, Jessica developed an optic nerve glioma while in middle school which required multiple surgeries, and at age 23 a malignant peripheral nerve sheath tumor which took her life eight months after her 25th birthday. I became a sustaining (monthly) donor in Jessica's memory, and to in my small way try to be a part of achieving CTF's goal of "ending NF through research."
@carolynhice781
@carolynhice781 5 жыл бұрын
So very informative! Thanks for helping us to better understand NF.
@carlys567
@carlys567 4 жыл бұрын
Hello, I was diagnosed as a carrier of NF1 when I was 11. I do have freckling under my armpits, lisch nodules in my eyes, and 4 birth marks on my body. I'm now 25, and have no issues thankfully. My entire life I've been told I'm a "carrier", does this mean I have NF1, or am I truly just a carrier and there is potential to pass it along to my future kids? Can you recommend any genetic testing I can look into for when I want to start a family of my own? Thanks.
@katekeltsctf9274
@katekeltsctf9274 4 жыл бұрын
Hello Carly, thank you for your question. Because NF1 is an autosomal dominant condition the concept of being a "carrier" does not apply. I am sorry this language has been used with you. I'd be happy to discuss the potential impact of your diagnosis of NF1 on any future plans to start a family further, please email me directly at kkelts@ctf.org
@caroloneile2780
@caroloneile2780 4 жыл бұрын
Hi iam carol from england I have neurofibmrotis type 1 I have lots of problems I have too use. A wheelchair iam in a lot of pain.i cannot walk very far 3 or 4 steps that is it.
@lisalord9539
@lisalord9539 5 жыл бұрын
Hi can you past Nf1 too your nieces or newphew? I have Nf1 but my sister dosnt but my niece might have it
@katekeltsctf9274
@katekeltsctf9274 5 жыл бұрын
Hi Lisa, the simplest answer to your question is no, you cannot pass NF1 to your nieces or nephews. If your niece does have NF1 there are other reasons for that which are more complicated than I could explain here. I'm happy to discuss via email but I would also encourage your family to work with a genetic counselor who can take a complete family history and explain things more thoroughly. If you would like help locating someone near you please email me: kkelts@ctf.org Thank you for watching!
@DarlindaDonahue-ob1pq
@DarlindaDonahue-ob1pq Жыл бұрын
I have nf1 and had gist cancer in my stomach what is the chance that it will come back
@ethiopiadinku9881
@ethiopiadinku9881 Жыл бұрын
Hello Kate, can you please explain why spontaneous mutation might occur? What are the causes? I know that bad habits like smoking can cause damage to DNA or chemical exposures may cause it so can you please explain if that are the main cause for the new mutation? Thank you for your response
@childrenstumor
@childrenstumor Жыл бұрын
Thanks for your question. Sometimes there are random errors in the genetic code. Nothing that anyone did or did not do (drinking, smoking, etc) can cause the change that leads to an NF diagnosis.
@ethiopiadinku9881
@ethiopiadinku9881 Жыл бұрын
@@childrenstumor Thank you so much for your reply. However, just to make it clear, my question was if a mother was smoking during pregnancy especially in early phase of the embryo, (it is well know that substances in the sigaret are mutagenes) therefore it may cause a spontaneous mutation in the genes that develops the NF disease? Toxic Substances may interfere with the normal functioning of the genes correct? This is what i have found doing my researchs about cause of genetic mutations, so can you please clarify this point? Or are we defending the tabacco industry ? Why not reveling the truth… i really want to know because there must be something that causes the mutation! Thank you so much in advance!
@childrenstumor
@childrenstumor Жыл бұрын
@@ethiopiadinku9881 Research shows no correlation to anything a parent did before or after pregnancy that might cause NF. Here is a link that will take you to various publications about spontaneous mutations - I hope this helps: www.sciencedirect.com/topics/immunology-and-microbiology/spontaneous-mutation
@ethiopiadinku9881
@ethiopiadinku9881 Жыл бұрын
@@childrenstumor Thanks for your reply however, i said that bad habits cause mutation depending on when and where it occurres as a result it will cause a genetic disorder, it can be NF or other types of disorder. for example if someone drinks alchol during pregnancy the baby will be born with fetal alcholic syndrome. I will put in brakets here what i have found from the article that you have sent me about spontaneous mutation! (Mutagenesis Spontaneous mutations occur because of chance errors (base changes) during replication, the occurrence of which is probably influenced by natural background ionizing radiation. Mutation frequency can be enhanced by treatment of virions or isolated viral nucleic acid with physical agents such as UV or X irradiation or with chemicals such as nitrous acid, hydroxylamine, ethylmethyl sulfonate, or nitrosoguanidine. Base analogs, such as 5-fluorouracil or 5-bromodeoxyuridine, are active only when virus is grown in their presence because they are mutagenic only when incorporated into the viral nucleic acid. Chemical mutagenesis is an important tool for laboratory studies in viral genetics, since the mutation rate is greatly increased, thereby making it possible to select mutants that would otherwise occur too rarely.) What do you think about it?
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