Ask Kate: When to Worry About These Common NF1 Symptoms

[@Jess_lightining]

I have had all these symptoms since I was little and will not go to treatment. I forget that I have this autoimmune disease and am super dead after work sometimes the pain is so bad that I can't get back up for a few hours or so and have to realign my ways of getting up because I choose to sleep on a hard floor so I can feel the most support.

[@angelsgarden3000]

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]

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]

@@josiebyron9596Lol. Love to see family connecting in the comments.

[@islamicknowledge9832]

Does your child has other symptoms rather than dirty neck and spot

[@johnatayev55]

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

[@071949]

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

[@bridgettmccraw2933]

My son was born with a hearr defect and has been sick since he was 4 he just turned 8 and now he has over 15 cafe au lait spots in the last 6 months randomly. No doctor can explain whats going on. He stays so sick with fevers and his blood work is bad. No answers.

[@letsfindoutwhy3233]

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.

[@onemutualaid7098]

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

[@herendiragonzalez4793]

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]

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.

[@KenMyke]

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]

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]

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

[@ramnareshjharamya]

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

[@familiaresurreccion]

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]

Thank you for the suggestion, I will add it to my list of topics to record.

[@familiaresurreccion]

@@katekeltsctf9274 Thank you very much 🥰

[@monicadahl7715]

Where can I go in Southen California to get genetic testing for myself and my autistic grown son?

[@childrenstumor]

Hi Monica - for a list of doctors and geneticists who know about NF, you can go to www.ctf.org/doctor

[@triciarichards161]

Thank you so much for your continued information and 💗

[@GayanSenarathna-o9e]

I have nurofidroma it have medicine

[@onuspromis7166]

Which one?

[@mattscott6591]

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

[@manriqueboys]

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]

Hello! I tried to post it but apparently KZbin does not allow sharing an email address in the standard format so I will post it like this: kkelts[at]ctf[dot]org.

[@rabiamaaz5682]

My baby also diagnosed with nf1 I have so many things to ask about

[@childrenstumor]

You can reach out to Kate at [e-mail]

[@kbm124]

Hi there, can you please tell me her symptoms, thanks 😊

[@rhondacole1573]

My granddaughter has nf1

[@brendapaint]

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]

At what age did the optic nerve gliomas develop? If you don't mind me asking

[@madihaafreen23]

@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]

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]

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

[@marcoantonioramirezlopez4365]

🙏🏼

[@i2010mac]

That’s why baseball cap don’t fit me 😞

[@beausaunders7786]

Yep I can’t wear hats either.