Ask Kate: When to Worry About These Common NF1 Symptoms

Рет қаралды 8,294

2 жыл бұрын

"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

@071949 2 жыл бұрын

Hi Kate, as always, interesting and informative. Thank You!

@angelsgarden3000 2 жыл бұрын

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 28 күн бұрын

May I ask how she is doing now? Are there more tumors now?

@triciarichards161 Жыл бұрын

Thank you so much for your continued information and 💗

@herendiragonzalez4793 2 жыл бұрын

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 3 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.

@letsfindoutwhy3233 2 жыл бұрын

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.

@marcoantonioramirezlopez4365 2 жыл бұрын

🙏🏼

@mattscott6591 Жыл бұрын

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

@familiaresurreccion Жыл бұрын

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 🥰

@onemutualaid7098 6 ай бұрын

How can I reach out to you my 5 month old has it

@monicadahl7715 2 жыл бұрын

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

@ramnareshjharamya 5 ай бұрын

Hi maam i am also suffering from Neurofibromatosis iam not feel weel feel bad not comfortable my self

@rhondacole1573 7 ай бұрын

My granddaughter has nf1

@user-hg7yv4mu5d 4 ай бұрын

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 3 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 3 ай бұрын

About MEK: chrome-extension://efaidnbmnnnibpcajpcglclefindmkaj/www.ctf.org/wp-content/uploads/2023/11/MEK_Inhibitors_Brochure.pdf

@brendapaint 2 жыл бұрын

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 3 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 3 ай бұрын

@@madihaafreen23 No, there are no dietary restrictions for someone diagnosed with NF1.

@manriqueboys 2 жыл бұрын

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 KZfaq 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 😊