Ask Kate: When to Worry About These Common NF1 Symptoms
"What are we supposed to worry about?" Recently Kate spoke with a Father whose child was newly diagnosed with NF1 and this was his primary question. In this video, Kate reviews three common manifestations of NF1 that generally are not a sign of a more serious issue: freckling, large head size, and lisch nodules.
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Пікірлер: 34
Hi Kate, as always, interesting and informative. Thank You!
When my daughter was born I thought her big cafe' au lait marks was caused by a treatment I had when I was pregnant with her because they looked like finger marks. Then when the freckling started showing around her neck I tried to wash then off thinking she had a dirty neck. Doctor told me what they were and said there was nothing we could do because it was a genetic disorder that had no treatment. That was in Maine in 1990. She was diagnosed in her teens when tumors started showing up.
@josiebyron9596
2 жыл бұрын
Oh hey Mama! 👋🏻 I was like this sounds awfully familiar 🤣 and I saw your name, and then I saw Maine 1990... and was like YUP this is a comment about ME!
@itoldyounottotouchit3336
Жыл бұрын
@@josiebyron9596Lol. Love to see family connecting in the comments.
@islamicknowledge9832
Жыл бұрын
Does your child has other symptoms rather than dirty neck and spot
@johnatayev55
3 күн бұрын
May I ask how she is doing now? Are there more tumors now?
Hi! Thank you so much for taking the time to post, it’s extremely helpful and reassuring. I wanted to ask you if there are any cosmetic treatments for facial cafe au lait spots. I do not know if my son will ever be bother by them, but if he is, is there a way to remove them?
@katekeltsctf9274
2 ай бұрын
Hello, thank you for this question. There are currently no treatments to remove or lighten CALS. If any product says that it can, please be skeptical.
I have NF1 and my eyes were darker green but my Lish nodules cover all the green and they have been completly brown since I was young.
Thank you so much for your continued information and 💗
Can the Nf1 symptoms be real mild? Like I have these little clear bumps on my hands mostly, and had a meningioma removed this year. I heard NF1 causes meningiomas too. I also have high blood pressure which I think is another symptom of NF1
How can I reach out to you my 5 month old has it
Hi Kate, my daughter is 6 years old with NF1. Please make a video about brainstem gliomas. This showed in my daughters MRI. Thank you very much.
@katekeltsctf9274
Жыл бұрын
Thank you for the suggestion, I will add it to my list of topics to record.
@familiaresurreccion
Жыл бұрын
@@katekeltsctf9274 Thank you very much 🥰
Where can I go in Southen California to get genetic testing for myself and my autistic grown son?
@childrenstumor
Жыл бұрын
Hi Monica - for a list of doctors and geneticists who know about NF, you can go to www.ctf.org/doctor
Hi maam i am also suffering from Neurofibromatosis iam not feel weel feel bad not comfortable my self
🙏🏼
Hello kate my name is ken myke l read on a wed sight there is meds for nf1 and nf2 so l am wondering about the meds what does the meds do and how can l prove l am in pain do to nf1 and nf2
@katekeltsctf9274
2 ай бұрын
Hello Ken! Thank you for watching and asking this question. Currently, the only FDA-approved treatment for NF is Koselugo (Selumetinib). This is a MEK-Inhibitor approved to treat inoperable Plexiform Neurofibromas in children 2-18 years old with NF1. I will add some helpful links below.
@katekeltsctf9274
2 ай бұрын
About MEK: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/www.ctf.org/wp-content/uploads/2023/11/MEK_Inhibitors_Brochure.pdf
My granddaughter has nf1
Kate, do you have NF1? or do you have a child with NF1? my daughter is 24 with Nf1. farily mild case, she does has optic nerve gliomas, but they stabilized- and are not causing problems, or growing. Thank goodness.
@hannahmarie2498
2 жыл бұрын
At what age did the optic nerve gliomas develop? If you don't mind me asking
@madihaafreen23
Жыл бұрын
@Brenda E is they anything we should not eat if we have NF1 did ur daughter Dr said anything they NF1 person should not eat
@katekeltsctf9274
2 ай бұрын
Hi Brenda - just saw this question, I apologize for the delay. I do not have NF, nor do I have a child affected by NF. I started working with the NF community in 2006 and have never left. It is a wonderful community!
@katekeltsctf9274
2 ай бұрын
@@madihaafreen23 No, there are no dietary restrictions for someone diagnosed with NF1.
Can you please tell me your email my seven month old is diagnosed with NF1 and I am new to this has so many questions and worries
@071949
2 жыл бұрын
Hello! I tried to post it but apparently KZread does not allow sharing an email address in the standard format so I will post it like this: kkelts[at]ctf[dot]org.
@rabiamaaz5682
Жыл бұрын
My baby also diagnosed with nf1 I have so many things to ask about
@childrenstumor
Жыл бұрын
You can reach out to Kate at kkelts@ctf.org
@kbm124
Жыл бұрын
Hi there, can you please tell me her symptoms, thanks 😊
That’s why baseball cap don’t fit me 😞