Ask Kate! NF1 and Pain
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- čas přidán 7. 09. 2024
- In this "Ask Kate!" video, Kate responds to a question about pain associated with NF1.
If you have a question or comment about neurofibromatosis for an upcoming "Ask Kate" video, please include it in the comments below, or email Kate at kkelts@ctf.org
Kate Kelts, RN, is the Patient Support Coordinator at the Children's Tumor Foundation.
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What is the Children's Tumor Foundation?
Children’s Tumor Foundation (CTF) began as the first grassroots organization solely dedicated to finding treatments for NF. Today, CTF is a highly recognized global nonprofit foundation, the leading force in the fight to end NF, and a model for other innovative research endeavors.
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Hi from Seattle! Thank you for this video. Explaining my pain to family and doctors can be so difficult sometimes.
I get headaches
Hi I am 57 mail with NF1 I feel that I have reached the thrush hold of pan and just don’t feel any pain.
The Pain is unbearable💔💔💔
yes it is unbearable😥
My daughter who is 4 just recently got diagnosed with NF1 N she's been having headaches daily n now the past w
2 weeks she says her legs hurt sometimes she can just fall outta know where
My daughter Jessica had NF1. For a long time she complained of leg pain but whatever exam was done did not determine a cause. Then she developed a condition in which she was unable to pee. This time tests determined she had a large (13 cm x 15 cm) plexiform neurofiboma (PNF). Doctors did a excision (resection), but unfortunately there were complications. This excerpt of an article from the National Institutes of Health describes it well: "PNFs can involve an entire plexus of nerves and demonstrate an infiltrative pattern. Although PNFs are benign they have the potential to transform into malignant peripheral nerve sheath tumors which demonstrate aggressive behavior. Many experts recommend resection given the underlying malignant potential. However, locally infiltrative pattern can make these resections quite difficult." Sad to say this transformation happened to Jessica, and because treatment options are limited she died eight months after her 25th birthday. I am a ongoing monthly contributor to CTF in the hope that research will help develop better methods of combating this condition so that other NF families are spared what befell my daughter.
You are a wonderful advocate for the NF community Roger, thank you for your continued support!
Thanks Kate!
You are doing a wonderful job with these videos.
I have multiple NF 1 and I am from Mumbai India.
There is not much of awareness and treatment available for this condition in Mumbai.
I had plexiform neurofibroma near my groin region about size of a fist and I got it removed about 16 years ago and fortunately it hasn't reoccurred.
It is difficult to to deal with the pain associated with these tumors.
I have small tumors on my fore finger and it pains when I work on my laptop or phone.
Doctor says surgical removal isn't possible because they are very small.
I believe Vipassana meditation helps me to deal with this pain.
For more information on Vipassana meditation please reply to my post and I will get back to you soon.
This is kinda answered a lot of questions for me. I don’t seem to have pain from my NF. But have pain all over and taking more and more pain killers which is not really an answer more masking it. So I’m going to be asking some more questions when I go and see my NF nurse and Neurologist later this year.
I did read something this afternoon which sounds like I could have another issue but who knows
I am so glad this was helpful Paul, and I hope you are able to have a meaningful discussion about your pain with your medical team.
My pain is hell it worst part for me is how I only notice it on my days off from work,sometimes nothing helps it not even medical cannabis only thing that would is having me pumped full of drugs and that’s something I wouldn’t want to begin with. One thing I’ve noticed is if I’m always active I don’t hurt as bad.
Can someone just have cal spots for all their life and no other symptoms if they have nf1?
Me gustaría que colocarán subtítulos a los vídeos porque yo solo hablo español.
Hi Kate!
I'm back with a question for you.
Can we use Transcutaneous Electrical Nerve Stimulation System for the NF 1 Tumor pain management?
I bump my fingers and it feels I smashed it with a hammer 😭😭
I hate it
hi kate do you have nf1
I have nf1 curved spine prity shi!