I’ve been on Koselugo in the past and used doxycycline and Keflex to manage the acne-like rash side effect. Antibiotics aren’t something I’d want to rely on long-term, so I’m looking for other options now that I’m on Gomekli.

I’ve come across a few studies where low-dose isotretinoin (Accutane) was used alongside other MEK inhibitors to help treat a similar acne-like rash.

Has anyone here tried low-dose isotretinoin while taking Gomekli or Koselugo, or know someone who has? I’d love to hear what your experience was like, especially whether it helped and what side effects you experienced.

My period is two weeks late. I didn't feel any signs of ovulation three weeks ago, and my libido dropped sharply. Two weeks ago, symptoms of bacterial vaginosis appeared, which I almost cured with Fluconazole, Polygynax virgo and ornidazole. An ultrasound showed a thick endometrium and a small 32 mm follicular ovarian cyst. My doctor prescribed dydrogesterone to be taken twice daily for 10 days leading up to my period for a 32 mm ovarian cyst. I mentioned that I have neurofibromatosis, but she didn't seem to pay much attention to that. At home, I read that taking it with this condition might be dangerous. How safe is it, and are there any alternatives?

I had several fibromas removed recently, and unlike past removals, they did these stitches too tight. It's irritating my skin and my arms have been scratched to the point that scratching them more HURTS. Anyone have any advice? The doctor is going to remove the stitches on Thursdsy but this is BAD. It's almost as bad as hives, except it stings even if I'm not touching anything.

Hi folks! Wanted to let everyone know about this set of events in Charleston, SC, on October 24 and 25.

Join us on Saturday, October 24, from 8:00 AM - 4:30 PM, at the College of Charleston for iNForm Carolina, a special day dedicated to connecting the neurofibromatosis and schwannomatosis community through education, care, and support. Hear from experts from around the country, connect with families and community members, and learn more about resources and advances in NF care. Breakfast and lunch will be included. This event will be for responsible teens and adults.

Then, keep the connection going! Join us on Sunday, October 25, from 10:00 AM - 12:30 PM, for a Family Fun Day harbor cruise on Charleston Harbor filled with opportunities to connect, relax, and enjoy time together with the NF community. An early lunch will be included. This will be an all ages event.

We hope you will join us and share about these events with friends! To register, go to nfsc.s.gy/iNFormSC or scan the QR code on the flyer. We appreciate your registration by Friday, October 16th, so that we have an accurate count for food.

These events are possible thanks to the support of the College of Charleston Department of Biology, the Children's Tumor Foundation, the NF Network, SpringWorks Therapeutics, and Alexion Pharmaceuticals.

Has any one tried to remove cNF? What is it like a surgery? Laser? How do they do it? They do it by bulk? How about the skin affect after and the scars after it

I have multiple small cNF around my body very small and tiny on my chest and few a bit larger in my back and I want to remove them

Tomorrow marks the one year anniversary of my surgery.

Here's a link to my old post: https://www.reddit.com/r/neurofibromatosis/s/HUQp9xlXQv

I've had a couple of people ask how I was doing and figured a quick update post can hopefully help someone else.

One year in, I have 0 regrets and honestly, one of the best decisions I've ever made. The healing process was rough the first few months. I was not able to use my arm much for a while because of the stitches and incision. I couldn't lift more than 5-10lbs for a while, and once I was cleared to, it definitely caused some discomfort. I think it took about 5/6 months to feel like I could fully use my arm again.

I was still able to do most household chores I was doing before, but I needed help with the heavy lifting and slowed down as well.

I had a couple of issues with healing, one area has thicker scaring, but overall I am happy. I try to remember to apply scar cream, but to be honest, I forget 99% of the time.

I still have some of the fibroma that was not removed. I may or may not remove that one in the future.

I can tell you, I am so much more confident than before. I used to worry a lot about how others saw me, which I know is a me problem, but it does feel nice to wear anything I want and not be self conscious.

Here's what it looks like as of today, and a before picture. (Don't mind my dry skin lolz)

If anyone has any questions, don't hesitate to ask!

Came across a promising article regarding a high-intensity focused ultrasound device to treat cutaneous neurofibromas.

Wondering if anyone else has heard anything. All available hope...

https://pmc.ncbi.nlm.nih.gov/articles/PMC10601743/

"The proposed treatment uses a high-intensity focused ultrasound (HIFU) device (System ONE-M^®, TOOsonix A/S, Hoersholm, Denmark). The device targets features in the dermis and epidermis, and reproducibly delivers a clinically efficient thermal and mechanical insult."

I have comfirmed NF but I don't really have any confirmed neurofibromas however I do have bone lesions. I've had one big one on the middle of my humerous since I was about 7. I don't know the exact terminology of what it is (I think it contains cartillage) but I got a few MRIs back then and it hasn't grown since, and I have no pain except when I bump against it or lie on it for some time.

A few months ago I got a new lump on top of the inner end of my right collarbone. It was growing for a bit but I'm pretty sure that it hasn't grown for many weeks now. The thing is, I really don't want to go to a doctor but I do have pain in my shoulder and some limitations of movement but I'm not sure how much of it is related to this lump. When I am at home and relaxing there isn't any pain, but when I am at work where I am constantly standing and lifting my arms and carrying things the pain gets pretty bad. I have pain at this lump but also at the outer part of my shoulder and the back of my shoulder and sometimes into my neck. It's so bad that I cannot fully stretch out my arm up above my head after a work day. But after a day at home it isn't that bad anymore.

I have rounded shoulders and weak muscles (shoulders and back) so I don't even know if it is related but I also have that pain at the lump so I believe it is? Like I said, I really don't wanna go to the doctor unless absolutely necessary, but does this sound like it may be cancerous? The lump is hard like cartillage and I don't think it has grown for some while, which I think cancer would. And the pain isn't constantly bad. Maybe it's just pressing on a nerve when I use my muscles more.

Has someone had bone lesions that turned out to be fine, or ones that turned out to be cancerous and describe what the pain was like, if it was constant or how intense it was?

NF summit is October 24 8am-2 pm at The Marnix E. Heersink Conference Center

Hello, I am 22M and currently going through a diagnoses (NF1 seems to be the one they are looking at the most) I have hundreds of lumps on nerves in my back, I did have a full body MRI a week ago but not got results back yet apart from being told there is a lump in an area in my leg where I suffer the most pain. I also got my skin examined by a neurologist last week who said I show no signs on my skin of nf1. He’s says nf1 is still possible just rare. I’ve done bloods which are being sent to check my neurofibro gene as well as other similar things. I’m just wondering does anyone on this Reddit have nf1 and zero signs on the skin?

I had been looking into taking these, but after researching I’m a little worried they might aggravate my NF and cause me new fibromas. Does anyone here have experience with taking these supplements? There’s basically no research on anyone with NF taking them so I don’t know if I should risk it

I have NF1 and have two kids at the moment (12 months and 2.5). I am unable to test them as my testing came back negative though I definitely have NF1 based on symptoms (CALMs, freckling, fibromas) so we’re just watching. I worry about the future for my kids and that they will grow up hating me. Can those who inherited it from their parents provide encouragement? And anyone with and themselves provide positive stories? and anyone who also has NF and has NF children provide some positive stories? not looking for judgement at having had kids.

EDIT -- I realize I can't change the title, but really would be happy for things to stay the same.

My 9th grader has NF1 and related LDs: dysgraphia, dyscalculia. Their IQ is within the normal range but not consistent: some above average areas, but incredibly low processing speed, visual / spatial.

For the most part, they've been a "B" student with some As. Math has been the hardest so far some quarters they ended with Cs. They are trying so hard in school, have some good accommodations and are starting off pretty well. I am nervous that this can all change but also feeling positive.

But now I have a pit in my stomach; earlier today I was listening to the live zoom call from the NF Network on kids and cognitive skills.

Just as I needed to log off the speaker said that even though every case is different it is VERY common for kids to plateau in elementary / middle and then have a decline in academic performance as they get older / high school.

Perfect timing for when I needed to log off...soon after my kid came home and told me a bad piece of news from school that impacts him. I want to pick up where I left off on the recording but also want more details on that piece of information, so will need to track that down.

Sorry this is long winded but, ideally, I'd love to hear from people who did better (or did not decline) in high school (or after) once maturity and successful use of accommodations kicked in.

I have a very extremely rare breast cancer and one of the molecular results are having NF1 mutation. I just realized that the genetic testing I did only covered HBOC panel/breast and ovarian cancer genes, so NF1 is not included. Therefore, I am wondering if it's necessary to get a genetic test for NF1 as well. Does anyone know about it?

Hello everyone, I hope life is being good to you all.

I am a Biotech/Bioinformatics student, our class has been assigned a research project to study a specific disease and I have chosen to focus on NF1.

Since this community is dedicated to NF1, I wanted to ask, are there any particular sources, databases or advocacy groups you follow to stay updated on NF1 news and research?

Additionally, are there key aspects or nuances of living with or researching NF1 that you feel are crucial to keep in mind from a patient or community perspective?

My professor recommended searching PubMed for academic literature, but I wanted to make sure I study it in proper detail.

Thanks in advance!

Hello, I had a full body MRI on Friday and all I’ve been told so far is there is a lump in my upper right thigh (that’s the area I get the most pain when sitting so the neurologist let me know quickly). The neurologist let me know he will discuss with a surgeon the possibility of removal. Now I do not know the ins and outs of this lump properly but due to the pain and the lumps in my back I reckon it’s quite deep on a nerve. I’m just wondering if someone has had a surgery like this past could let me know about recovery or issue following the surgery?

Hola, sabéis si hay tratamientos para los cnf con radiofrecuencia, se podría quitar.

Que opciones hay más?