Ask Kate! All about café au lait spots in neurofibromatosis type 1

Подписаться 3,9 тыс.

Просмотров 10 тыс.

50% 1

Do you have a question about neurofibromatosis? Ask Kate! Kate Kelts, RN, BSN, is the Patient Support Coordinator for the Children's Tumor Foundation. Submit your question in the comments below, or email Kate at kkelts@ctf.org. Click here to subscribe, and click the bell so that you receive alerts when new videos are posted: www.youtube.co....
To enable Closed Captioning, click the CC button. Note that CTF is not a medical center, and we cannot give direct medical advice. This video series is for informational purposes only, and is not a replacement for diagnostic or medical care.
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.
Visit our website at www.ctf.org/
Donate today at www.ctf.org/wa...
Follow us on our social media platforms:
Facebook - / childrenstumor
Instagram - / childrenstumor
Twitter - / childrenstumor
LinkedIn - / children's-tumor-found...
#endnf #nf1 #nf2 #nf2swn #swn #childrenstumor #neurofibromatosis #schwannomatosis #nervetumor #tumor

Опубликовано:

14 окт 2024

Ссылка:

Скачать:

Готовим ссылку...

Добавить в:

Мой плейлист

Посмотреть позже

Комментарии : 69

@americanfreedomlogistics9984 5 лет назад

I have numerous café au lait spots . Some have other spots inside of them. The biggest is the size of a plum

@Coldnfallen 3 года назад

I do, too! Some dappled too many times to count. I would feel so plain without them, though.

@masayangbuhay5027 5 лет назад

Just now learning about all of this. My son has had 4 (about a quarter size) light brown spots under his armpit since birth. I looked it up and found out about cafe- au- laite spots. I always just thought they were cute birthmarks. He's now 2 and is having some difficulties with mile stones and I found out about NF and thought about my son's birthmarks. Should I take him into a neurologist to get checked out?

@user-ns4ll3wp3p 5 лет назад

Yeah you should. By the way, i am 18 years old and i have these spots too. So i highly recommend u to make laser treatment. When i'm growing up, my friends bullied me. I cried so many times, i feel like i'm not normal, i won't be like them etc. Hope u don't let ur son cry... Have a nice day

@katekeltsctf9274 5 лет назад

Hello Damaris, I apologize that I missed your comment here. What you are describing does not mean he definitely has NF1, but if you are concerned I would discuss it with his pediatrician. I am happy to discuss further via email. Please contact me at kkelts@ctf.org

@lawrarazoza8925 5 лет назад

@@user-ns4ll3wp3p did your spots got cured ?? I too have it , a big cloud like spot on my chest and covered upto arms , and i have it too on my stomach , nd legs .. I got some advice not to use lasers , since they may cause side effects ,, is it so ??

@lawrarazoza8925 5 лет назад

@@katekeltsctf9274 Hello sis ,, I have a cafe au lait macule spot , a big cloudy like one over my chest nd shoulder upto my arms ,, i am getting itchy sensations some times. I refered dermatologists ,, they said they are birthmarks nd they will never go off,, . So i end up in mood out. And i searched over net on it and end up with same answers. Now i want to get rid of it , since i am unable to wear my fav dresses nd it's like reducing my confidence level . what to do with ?? will it get off by taking some natural remedies ??

@katekeltsctf9274 4 года назад

@@lawrarazoza8925 Thank you for your question. There is currently no safe and effective way to remove cafe au lait spots that have been well researched. You said that you have seen a dermatologist about them, have you been given any kind of diagnosis related to the CAL's? If you'd like to discuss more you can reach me at kkelts@ctf.org

@famalam1991 Год назад

Daughter is 20 now with 5 large cafe au lait spots, last 3 years sudden onset diagnosed sensorimotor axonal polyneuopathy with chronic pain. I only just found out what her marks are, struggle to get a doctor to listen, can these symptoms be a symptom of nf1? We have specialist appointment in London in March, should I tell doctor about this finding sooner? Maybe a piece to the puzzle of why she has what she has because so far they've no clue? Thank you had genetic testing but came back normal but don't know of this specific nf1 was screened for.

@geetachauhan773 3 года назад

Can we remove this mark without laser treatment

@ambtechandentertainment988 4 года назад

I have café au lait starting from my left toes, covering my whole left leg and up to my stomach😭😭😭

@HHHli426 4 года назад

Me too

@Coldnfallen 4 года назад

I have the rest of them for you! I have them up my torsk, but nothing on my right side. 😂 I love them. They make me beautiful and unique. Love them. People pay to have birthmarks tattooed!

@hellisacoolplace2282 4 года назад

Hey please help me by answering my questions. So I have cafe-au-lait spots (more than 6) on my right groin,and I did some research about it all articles are saying that if you have more than six spots of cafe-au-lait then you might get affected by neurofibromatosis 1. I am totally in shocked,'cause I never thought a simple birthmark is possibly a decease.And it says that an affected one might appear healthy,you'll never thought that you have NF1 'cause you are healthy and no symptoms.....I'm soooo confused help me please,I don't want to tell to my parents 'cause they might get worried and this thing happening to us (Covid-19).

@katekeltsctf9274 3 года назад

Hello Frensika, I wish I had seen your question sooner. Please contact me directly kkelts@ctf.org and I'll be happy to discuss this. I do want to also encourage to speak with you parents if you feel safe to do so and then perhaps your doctor. Please remember that CALS themselves do not cause any medical problems and only a doctor can make a diagnosis of NF1.

@elleb8384 Год назад

Can a spot be light like if you're of a darker race can it be white? And the rest dark

@theoriginalaquawoman 5 лет назад

If the cafe spots all touch each other at their margins and cover a fairly large area say an arm or leg, would that be considered one large spot or multiple that touch? Thank You in advance.

@katekeltsctf9274 5 лет назад

Hello and thank you for your comment. It's difficult to answer this question accurately without seeing what you are describing. If you have NF1 and are concerned about the shape, size, texture, or any recent changes in a cafe au lait spot (or spots) I would encourage you to talk to your NF doctor. Also feel free to email me directly: kkelts@ctf.org

@jullietellez7872 2 года назад

I want to get my removed

@theralendz9136 4 года назад

Hello I need help my Café Au Lait Spot is on my back left butt lock and it is hurting a lot I been experiencing a lot of pain like pressure and I want to know if there is a reason for this any help will be gladly appreciated ~thank you

@katekeltsctf9274 3 года назад

Hello, thank you for watching these videos and for your question. If you are experiencing pain I recommend that you speak with your doctor about this. New pain that you previously did not have might be an indication that your CALS needs further assessment. Please contact me directly if you have questions: kkelts@ctf.org

@agnieszkamichalska3011 4 года назад

My baby has 10 of them and only 5 is bigger than 0,5cm. Is there any possibility she is completely fine even she has those spots???

@katekeltsctf9274 4 года назад

Hello Agnieszka, thank you for your question. I recommend that you speak with your pediatrician if you are concerned. It is possible to have cafe au lait spots and no underlying conditions, but it is certainly worth speaking with your child's doctor about. Feel free to email me with any questions!

@ranjanamodak9407 3 года назад

I have multi cafe au lait all over body 😭 plz help me mam

@childrenstumor 3 года назад

Thank you for your comment. We encourage you to see a doctor familiar with NF. If you need help locating a doctor, please visit ctf.org/doctor

@arnabbiswas9461 2 года назад

Mi 35yers neurofibromatosis problem please mabicin name help me mam

@sophieaubin7197 3 года назад

My boyfriend's sister has NF1 (he does not), and we are thinking of having a baby of our own. Should I be concerned ?

@itoldyounottotouchit3336 3 года назад

No you should be alright. (:

@David-np4vo 2 года назад

Yes 50/50 chance your off spri g could inherited nf1

@imthe2253 4 года назад

Does laser treatment help remove them permanently? I'm 14 years of age and I want them gone. They're not that big cafe au lait marks they're actually pretty small. Sizes vary from 2mm to 8mm. Thank u very much for the answer in advance.

@imthe2253 4 года назад

Can y'all pls answer

@imthe2253 4 года назад

I'm waiting pls. Thank u 🙃

@landrymark2367 4 года назад

Elijah Balza Yes, lazer treatment can help get rid of it.but you will have to see your doctor as they will know better.

@clashking6489 3 года назад

So you find any solution??

@childrenstumor 3 года назад

Hello there - you www.ctf.org/understanding-nf/find-a-doctorcan find out more about cafe au lait spots in this resource: Here is more information about cafe-au-lait spots that we hope you will find useful: www.ctf.org/images/uploads/documents/PossibleNF1_CafeAuLaitSpots_(1).pdf We don't have any further information about removal, as they are not harmful or painful, but are useful in the diagnosis of NF. We encourage you to speak to your doctor regarding treatment options. If you need help locating a doctor or specialist in your area, please visit the link below, or reach out to our patient support manager at kkelts@ctf.org. Find a Doctor: www.ctf.org/understanding-nf/find-a-doctor

@harplabana4083 3 года назад

Hey, i have birthmark on my forehead. I want to remove it by laser surgery. Can the birthmark be totally cleared with the surgery..? One thing more i want to ask, Can this treatment Can cause any problema in future like skin cancer....

@childrenstumor 3 года назад

Thanks for your comment. Your questions will be best answered by a doctor upon examination. If you need help finding a doctor familiar with NF, please visit www.ctf.org/doctor

@HHHli426 4 года назад

Hi can i send you a photo of my birthmark ,cuz im not sure if this is cafe au lait I have in my hands ,stomach, legs

@katekeltsctf9274 4 года назад

Hello, thank you for your comment. Making any type of diagnosis or giving direct medical advice is outside my scope of practice. I am, however, happy to discuss via email any concerns you have. My primary suggestion is that you see a physician familiar with Neurofibromatosis for a complete skin exam. If you need help locating someone I may be able to assist, you can email me directly: kkelts@ctf.org

@jishapv589 3 года назад

Hi mam my 8 month girl baby has 7 cafe au lait spot.... i have 1 small cafe au lait spot .... pls help ... i am worry about this....

@childrenstumor 3 года назад

Here is more information about cafe-au-lait spots that we hope you will find useful: www.ctf.org/images/uploads/documents/PossibleNF1_CafeAuLaitSpots_(1).pdf

@aashikhan2904 5 лет назад

Mam my son surfing from neurofibroma f2 he have brown sport what can i do i am very tens mam plzzzzzzzz help me and reply i am wait ur reply thanks

@childrenstumor 5 лет назад

Hello, thank you for your comment, Kate would be happy to try and help in any way that she can. Please contact her directly at kkelts@ctf.org

@aashikhan2904 5 лет назад

@@childrenstumor 7351698636 from India

@aashikhan2904 5 лет назад

@@childrenstumor plz contact me I am sent my no 7351698636 this my no I am wait ur reply thanks so much

@dark20blade88 3 года назад

Im scared to have kids cuz i don't wanna pass NF to them. It could be way worse for them then it was/is for me

@childrenstumor 3 года назад

Thanks for your question. Only a medical doctor can make this distinction for you. If you need help locating a doctor familiar with NF near you, please visit www.ctf.org/doctor.

@aspergershelpaustralia1540 5 лет назад

A little-known medical fact is that NF1 is a common comorbidity with autism (they share a common cause). Learn more: myaspieworld.home.blog/neurofibromatosis-type-1/

@juanlennonsfunhouse2633 4 года назад

I got nf I wanna open up restaurant called caffe olay

@letsfindoutwhy3233 3 года назад

I would go there every day

@KYRA_FX 5 лет назад

I have a really big one, like a cloud on my body.

@dakesim 5 лет назад

Ky Ky me too :( I’m looking for ways to conceal it

@newzade1 5 лет назад

Me too.. And it appeared when I was 13.

@fathimadiya314 3 года назад

I have a big one on my face and small on my entire body

@crossdelvalle1138 3 года назад

i have it on my neck

@liisashearer 4 года назад

I have them, tiny ones and big ones head to toe scattered all over my body

@yeobo_4918 4 года назад

Me too, can i ask you a question? How are you dealing with it? Like are you also paranoid that people are looking at your skin or no?

@liisashearer 4 года назад

yeobo _ do you have them all of your stomach too? and i am getting better at accepting that itll stay with me forever, but people do stare and notice! but usually they say nice things, like , you have beautiful freckles, although i did get bullied in school, which made me self conscious about them

@clashking6489 3 года назад

I have big one on my left cheek is there any kind of solution to get rid of it

@liisashearer 3 года назад

@@clashking6489 i looked it up before and i saw laser treatment but its possible it could come back....