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Like dating someone with neurofibromatosis apologise

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Dating is so hard finding someone to appreciate you and only see your inner beauty is even harder I do live in NY but upstate NY. I have a BF but i worry as I get older and the disease worsens or the fibromas rather that he may leave me. I know that's awful but it is a big fear I have. Other than that all my friends an others have never judged me on my appearance.

He is a nice man.

Dating someone with neurofibromatosis

For months I thought I would never meet someone who did not care about my NF, he said he was proud to have me in his life. So I am leaving my fate in God's hands now, but as I said before if it's a good person he will see you not your NF. I wish I knew the answer. Being 24 this is definitely something I'm struggling with myself :. To be honest I told my husband early on.

We had known each other less then a year but only dating a few months. I don't have many very noticable signs of NF. I think if I had more it would have come out sooner. It's natural for people to wonder what the bumps or birthmarks are, so I told him. I also decided that I wanted him to know sooner than later.

What is Neurofibromatosis Type 1 (NF1)?

I explained that having children may be difficult. I felt I could be honest and didn't want him or me to waste time if considering other family options in the future was going to be out of the questions.

Some poeple have very strong beliefs about such things. We have been together for 10 years and are currently exploring those family options and he is still so supportive. For me it makes it less awkward when people ask. Most common questions are about the scars i have on my my legs from surgeries and sometimes about the "bumps" on my arm.

I usually get how "cute" it is to have freckles on my belly. I havent had any negative experiences since elementary school. Went through HS and college fine, occassional starring but it doesnt bother me anymore. But i think each person handles it differently especially when dating because you never know how someone will react. Hey Nobleicus, I'm sorry to hear. I'm praying that you can find someone special. Keep ya head up. I told my boyfriend of 3 years day one when we met.

The way i told him was that i was born with a medical condition called neurofibromatisos and i told him bout it and it seemed it didnt bother him, he is a great guy and there is someone out there for everyone. He loves me for who i am not the way i look. He say im beautiful inside and out. I told my husband right away. I dont find it a big deal.

not take head!

I knew I had NF but really dont think much of it. Im trying to learn more about it.

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This discussion is closed to comments. To start a new discussion in this community, please click here. I have NF1 I have functional motor skills and a jump pause in my speech when I talk at times how does one talk about this with a woman you might I like to read your stories and especially see that many of you are doing very well.

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Hi everyone, I am 33years old and I have NF1, it took years to find the diagnostics from being born, as my parents knew there was something Hey everyone. Just curious to see how we can all stay up to date with clinical trials and potential treatments for all things NF1.

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Advertising revenue supports our not-for-profit mission. This content does not have an English version. This content does not have an Arabic version. The best path for your care Turn to Mayo Clinic for safe, in-person treatment.

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Overview Neurofibromatosis is a genetic disorder that causes tumors to form on nerve tissue. Request an Appointment at Mayo Clinic. Autosomal dominant inheritance pattern Open pop-up dialog box Close. Autosomal dominant inheritance pattern In an autosomal dominant disorder, the mutated gene is a dominant gene located on one of the nonsex chromosomes autosomes.

Share on: Facebook Twitter. Show references Ferri FF. In: Ferri's Clinical Advisor Philadelphia, Pa. Accessed Sept. Neurofibromatosis fact sheet. National Institute of Neurological Disorders and Stroke. Korf BR. Neurofibromatosis type 1 NF1 : Pathogenesis, clinical features, and diagnosis. Evans DG. Neurofibromatosis type 2. Yohay K, et al. Neurofibromatosis type 1 NF1 : Management and prognosis.

Dec 19, † K. excitedly told me that she had the perfect guy for me, someone who had been her good friend since childhood. Never one to pass up an opportunity, I told her I was game. She warned me that her friend had a pronounced limp because he had a rare disease - neurofibromatosis, or NF - and he had many surgeries and successfully beat cancer. Jun 07, † Dating is so hard finding someone to appreciate you and only see your inner beauty is even harder.i just wish i had ppl with NF to hangout with. Advertisement. DatIng In: Neurofibromatosis Network. I'm I wierd for wanting to date someone with nf? I dont want to have kids(got one son no nf) but I just feel if I dated someone with nf I. Dating someone with neurofibromatosis - If you are a middle-aged woman looking to have a good time dating woman half your age, this advertisement is for you. Rich man looking for older man & younger woman. I'm laid back and get along with everyone. Looking for an old soul like myself. I'm a man. My interests include staying up late and taking naps.

Kinori M, et al. Ophthalmic manifestations in neurofibromatosis type 1. Survey of Ophthalmology. Chung LK, et al. A systemic review of radiosurgery versus surgery for neurofibromatosis type 2 vestibular schwannomas.

World Neurosurgery. Rochester, Minn. American Association of Neurological Surgeons.

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What is acoustic neuroma? Acoustic Neuroma Association. Flint PW, et al. I still feel the need to apologize when we do something together in a crowded place or loud setting and am anti social. I certainly worry LESS now but it never totally leaves me. She was in med school so I told her about my tumors and she wanted to see the scans and radiology report.

She thought it was fascinating. That was very lucky for me because it turned a worrisome conversation into something new and interesting. What advice would you give to others that have NF about dating? My biggest advice is to just be your best you. What if they like the fake you?

Are you going to commit to that role forever? Instead of saying that, I made a big production out of going to the grocery together to buy ingredients to make our own pizza and popcorn. I asked to be sure they were captioned because of my hearing. So we addressed the situation while making it a positive experience and unique date night.

In doing so we turned a negative experience into an NF related trip that we could look forward to doing together.

How this site came about: I started dating someone with neurofibromatosis. I didn't want the world to be so bleak for people with NF. I also saw that information on natural ways to help manage the condition was not collected in one place, the way information for natural treatment of conditions like cancer is collected. hi r/neurofibromatosis,. ive been reading thru a lot of your posts all morning and you all are so informative and supportive. im glad i stumbled upon this community. please pardon my ignorance, but i have some questions about dating someone with NF. Neurofibromatosis (NF) is a group of three conditions in which tumors grow in the nervous system. The three types are neurofibromatosis type I (NF1), neurofibromatosis type II (NF2), and schwannomatosis. In NF1 symptoms include light brown spots on the skin, freckles in the armpit and groin, small bumps within nerves, and Genetic.

With a little bit of effort, a lot of issues can become opportunities with a slightly altered perspective. Click here to read more about Matt's NF story. I just hit 30, and already feel as if certain joys, privileges, and well When Dell and I started dating, it was and I was I presented no real problems at the time.

After we'd been together about a year, he introduced me to mountain biking.

Hi bloojay, I just need to ate you on this guy I am dating, the subject came up yesterday and it wasn't planned but he told me "I see you and you are a beautiful woman". He is a nice man. For months I thought I would never meet someone who did not care about my NF, he said he was proud to have me in his life. Dating someone with neurofibromatosis - Is the number one destination for online dating with more relationships than any other dating or personals site. Find single man in the US with relations. Looking for novel in all the wrong places? Now, try the right place. If you are a middle-aged woman looking to have a good time dating woman half your age, this article is for you. Feb 12, † Living with neurofibromatosis can be hard and stressful. What a combination! We asked a few people living with NF1, NF2, and schwannomatosis to share their experiences and thoughts on meeting people, dating, relationships, and love. Matt Hay, NF2 "'Finding someone' isn't easy for anyone no matter how you look or hear or sound.

It took some serious relearning of what I'd forgotten as a child but I eventually got pretty good at it! However, after a few months of biking and building the outer calf muscles, we noticed my inner Gastroc was atrophied. I couldn't make my mind use that muscle group. At all.

you tell you

We continued to bike for a couple years, and the inner calf stayed atrophied. But the most concerning thing were these superficial 'cysts' or 'knots' that I kept feeling. What alarmed me was the shock that I got every time they were bumped.

join. agree with

Biking got harder and harder for me. My last bike ride was September 25, At the end of that year, Dell and I picked up the nerve tumor quest in full force, and finally, we were heard. February is when I got the first scan that revealed what I'd been feeling for years. Dell asked me to marry him that same month. Carrying Schwannomatosis is a daily journey of mental, physical, and emotional strength.


I, many times, fear total pelvic disruption. At the age of 28, mountain biking was taken.


I wonder, all the while trying not to worry There is no "normal. There is no remedy. There is no cure.

There is no "getting better.

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