Should I get married?

[Guest]

Hi,

Please help me out.I am currently in my thirties and single.I got a few lumps in my waist ,stomach and my arm.The lumps started to grow recently.I am having a 20% hearing loss in one ear for the past 4-5 years.My mom only had one lump and she had an itching problem after marriage.My dad also have a few moles on his body and he also has a hearing loss.Apart from that, they both are fit and fine.I showed to few GP and a neurologist.The GP said that they are non cancerous and there is nothing to worry about it..

The audiologist along with the GP was not aware of the lumps said that it is the problem with the eustechian tube....The doctor said 20% hearing loss is quite normal...

I showed to the neurologist and he also ignored the lumps on the waist line.He saw the one on the arm and said to go for a CT scan check up.I did that and the conclusion on the report was "A FOCAL SMALL ILLDEFINED AREA IS SEEN IN THE SUBCUTANEOUS PLANE OF THE LATERAL ASPECT OF THE MID PORTION OF THE ARM-THIS REPRESENTS NON-SPECIFIC FOCAL INFLAMMATION".

I am getting worried a lot as I am single and planing to get married in the future.I have asked the doctors and they said that you dont have to worry about it...

Is this NF1 or NF 2?

Should I get married?

If yes then is this something that I should disclose to my partner before marriage as it can affect in the future?

I don't want to bring unnecessary complications.I am finding it hard to live like this..Please advice....

Any help would be appreciated.

[Tygermouse]

I would tell whom ever I was to marry about my NF
I would not let NF stop me from getting married

[Orangecera]

I agree completely with the previous poster. I and the 3 other adult members of my family with NF are all happily married. With the exception of my mom (who didn't know anything about NF when she got married and had kids) we all told our spouses about our NF long before we were married. It is my (very strong) personal opinion that anyone with a serious genetic condition that can be passed on to their children owes it to a spouse/partner to tell them well in the advance of a marriage or plans to have children are made. I think it is a very personal decision whether or not to risk passing on a possibly serious medical condition and it is one that should be made by BOTH potential parents. One of my brothers and I both made the choice to have kids. Of the 8 children we produced, only one has NF, and her case, like the others in our family , is mild. Also know that there are several parenting options available to you today, such as adoption, surrogate parenting with a donor sperm or egg, preimplantation diagnosis, foster parenting, and of course, the decision to "take a risk".

It sounds like you are not completely confident of your diagnosis (or at least if it is NF1 or NF2?) I would consider a visit to a doctor who is very familiar with NF, to at least have your diagnosis clarified. NF1 and NF2 are actually quite different conditions, particularly in terms of which serious symptoms are most common. (If I had to guess I would say NF1 just from what you said, but I am not a doctor, and don't have nearly enough info to be confident. The reasons are that NF1 is 10 times more common than NF2, and that when you have NF2, you typically have a very distinctive set of ear-related complaints, and a 20% hearing loss wouldn't be a "textbook" example. And, yes, as you mentioned, unfortunately today many young adults are showing up with mild hearing losses due largely to years of too much loud music on personal players.

[Heidi]

I am 3rd generation of NF nd been mareid 35+ years to awnderful man as my NFgets worse he alsohads short term meory problmes nad motor nerve damge from awreck it effects his left side my NF'sare allover too every inch of mybody when we were dting hardly any now post menopausal geting more too so I would say talk to yuor boyfirned or the man yuoare dating tell him abuot yuor NF even if yuo feel comfortable elt him come to a dr's appt with you too ok.w ehave twin sons one said he doesnothave nF's buthe has had some moles removed the dermatologist clinic c said not Nf the other one nort been to the dr since he has ben mareid 10 years.ONe grand daughter doesnothave it she is uor step grand daughter buts till grand daughter tous then steven daughter Regan sia ge 3 and s far no signs yet. so yes get marerid live yur life ut be happy yuo wilnot regret it t all take it from somene who has been marreid 35 years alsomy hubby is 14 years older than me. heidi

[Amber1]

Why let a chance of love and happiness get away.. Don't let NF dictate your life or your happiness!

[rebecca2]

I agree with everyone that has responded to you. I am married. Our first child is due in sept. I didn't let my NF get in the way of me being happy. My husband knows about the NF and he loves me regardless of it. Don't let your NF prevent you from being happy. I would definately go to a doctor that knows something about NF.

Hi,

Please help me out.I am currently in my thirties and single.I got a few lumps in my waist ,stomach and my arm.The lumps started to grow recently.I am having a 20% hearing loss in one ear for the past 4-5 years.My mom only had one lump and she had an itching problem after marriage.My dad also have a few moles on his body and he also has a hearing loss.Apart from that, they both are fit and fine.I showed to few GP and a neurologist.The GP said that they are non cancerous and there is nothing to worry about it..

The audiologist along with the GP was not aware of the lumps said that it is the problem with the eustechian tube....The doctor said 20% hearing loss is quite normal...

I showed to the neurologist and he also ignored the lumps on the waist line.He saw the one on the arm and said to go for a CT scan check up.I did that and the conclusion on the report was "A FOCAL SMALL ILLDEFINED AREA IS SEEN IN THE SUBCUTANEOUS PLANE OF THE LATERAL ASPECT OF THE MID PORTION OF THE ARM-THIS REPRESENTS NON-SPECIFIC FOCAL INFLAMMATION".

I am getting worried a lot as I am single and planing to get married in the future.I have asked the doctors and they said that you dont have to worry about it...

Is this NF1 or NF 2?

Should I get married?

If yes then is this something that I should disclose to my partner before marriage as it can affect in the future?

I don't want to bring unnecessary complications.I am finding it hard to live like this..Please advice....

Any help would be appreciated.

[Di4tennis]

Life is too short and one should find love and happiness. I did not find out that I had NF until I was expecting my daughter. Fortunately, she does not have NF and her son does not have any NFsymptoms yet. I have led a happy and productive life. Just let him know about NF and if he truly loves you, it will not matter.

[StacyD]

I got married just a bit over a year ago. I'm 37 now and he's 41. I think b/c of our mere age, we'll likely not have kids. I have vowed though, not to have NF kids, so if I do, there will be medical intervention to avoid such a thing (i.e. IVF-PGD or Egg Donation).

But I'm actually liking the TINK life, alot!

[legend]

I got married a little over 2 years ago. I always used nf as an excuse not too. but then a good friend helped me relize i need to be me. i decided to listen and met the perfect girl. I told her about the nf on the first date. so just be you and realize that if you find happiness go for it.

[Amber1]

I have been married 14 years to the most amazing man he is caring, kind, understanding, has a huge heart. I almost let him slip by because of my NF. He dosen't see the NF and loves me for me. Not for what I lack. or have. Don't let a good thing slip away you may regret it all your life.