[mugwort2]

My post is concerning my relationship with my sister in law. Before I begin I feel need to explain. She is the sister of my late hubby. He passed 12 years ago but she and I are still in contact.
I wrote on my Facebook page a couple days ago I was seeing a primary to find out more info on a genetic disorder I inherited from my father. I mentioned one of the hallmarks of the syndrome is progressive hearing loss. I received several messages wishing me well with my visit. One of them was from my SIL that I shouldn't be concerned.
My question is this? Is it wrong to be interested in a condition that affects you? I realize its my life and I can of course decide what is of interest to me. I mean it is literally a part of me. Am I wrong to be interested in this matter?
If you're interested its Waardenburg syndrome.2 Its 4 most common features are in order of highest prevelance are premature graying. (Grey hair before 30 including white forelock)(born with gray hair) 2Different colored eyes. Left eye blue/hazel. 3 Unpigmented skin usually on the fofehead. Not true of me. 4 80% Born deaf either in one or both ears from mild to complete deafness. Not true of me. Its one out of 50,-000 births. Sources US. NIH Rare Disorders Division.
The visit went well He gave me a referral to a medical geneticist.

well you must be concerned because you went to the specialist. nothing wrong with that. good to know. if she doesn't agree that is her issue. it is your health, not hers.

[seesaw]

Originally Posted by mugwort2

My post is concerning my relationship with my sister in law. Before I begin I feel need to explain. She is the sister of my late hubby. He passed 12 years ago but she and I are still in contact.
I wrote on my Facebook page a couple days ago I was seeing a primary to find out more info on a genetic disorder I inherited from my father. I mentioned one of the hallmarks of the syndrome is progressive hearing loss. I received several messages wishing me well with my visit. One of them was from my SIL that I shouldn't be concerned.
My question is this? Is it wrong to be interested in a condition that affects you? I realize its my life and I can of course decide what is of interest to me. I mean it is literally a part of me. Am I wrong to be interested in this matter?
If you're interested its Waardenburg syndrome.2 Its 4 most common features are in order of highest prevelance are premature graying. (Grey hair before 30 including white forelock)(born with gray hair) 2Different colored eyes. Left eye blue/hazel. 3 Unpigmented skin usually on the fofehead. Not true of me. 4 80% Born deaf either in one or both ears from mild to complete deafness. Not true of me. Its one out of 50,-000 births. Sources US. NIH Rare Disorders Division.
The visit went well He gave me a referral to a medical geneticist.

I don't think you're overreacting. The sooner you know whether or not a genetic condition will affect you, the sooner you can do things to manage it or address it. I really hate when people dismiss others' health concerns. We're trying to pinpoint my neuro dx and one possibility is MS. Everyone is telling me, oh, that's unlikely, and I'm like, no, not really. It's a real possibility. Hopefully it's not that, but it could be. Don't dismiss my concern that is a) based in reality and b) whatever, doesn't matter just stop.

I think it's good you saw your primary about a health concern. That's exactly what you should do, rather than ignore it. Just ignore your SIL. She probably is trying to comfort you in that weird, dismissive way some people do.

[~Christina]

Has your SIL made other comments that just are “ just I guess outside of what most people would say?”

My SIL comments so oddly on random things I have posted on Facebook. Few years ago they found a growth of My pituitary gland, I got lots of support and her response was “ oh that’s so cool “ ummm meanwhile I’m worried I’d need brain surgery or something.

[mugwort2]

Resurgam TY for your encouraging response You're absolutely right It is my health not hers. Thanks for your kind words

[mugwort2]

Seesaw you're right. Better to be safe than sorry. ie being proactive in one's health care.

[mugwort2]

Christina. I need to think about if my SIL made any other similar comments, None come to mind now. Growth on your pituatary gland SIL "Oh that's so cool" That is so weird she'd say that .

[divine1966]

Honestly if you don’t want people to comment on your doctors visits its probably better to not share it on Facebook? That’s social media for you. I have weird SIL too. In fact both SILs are. My husband’s sister and brother’s wife, both say strangest things. Maybe they think I am strange too lol

Now if you had no hearing loss at all until now and don’t have any other features it’s likely you don’t have it. If you have W syndrome you’d have hearing loss at birth and yes it could get worse with time but it wouldn’t appear out of no where at older age. (I am familiar with it from professional stand point.)

So are you assuming you have the syndrome or you were diagnosed? Perhaps your SIL was commenting that you shouldn't worry because you’d know if you have it by now

Well it's your health, so I would ignore your SIL's comments. I wouldn't share anything more on your Facebook page otherwise she will always comment.

[MickeyCheeky]

Well, it doesn't hurt to see whether it's true or not, does it, @mugwort2? I think you have EVERY RIGHT to check in and make sure! Your Sister In Law may disagree with you but the choice is yours and there isn't ANYTHING wrong with it! Definitely go check it out! It is your own health and it IS better to be safe than sorry! Check out if there are ANY problems so that you'll know in advance and you'll be able to do something about it IF that's the case of course! Let us know if any problems show up if you want to, of course! Sending many safe, warm hugs to you, mugwort2!!

[Buffy01]

Originally Posted by mugwort2

My post is concerning my relationship with my sister in law. Before I begin I feel need to explain. She is the sister of my late hubby. He passed 12 years ago but she and I are still in contact.
I wrote on my Facebook page a couple days ago I was seeing a primary to find out more info on a genetic disorder I inherited from my father. I mentioned one of the hallmarks of the syndrome is progressive hearing loss. I received several messages wishing me well with my visit. One of them was from my SIL that I shouldn't be concerned.
My question is this? Is it wrong to be interested in a condition that affects you? I realize its my life and I can of course decide what is of interest to me. I mean it is literally a part of me. Am I wrong to be interested in this matter?
If you're interested its Waardenburg syndrome.2 Its 4 most common features are in order of highest prevelance are premature graying. (Grey hair before 30 including white forelock)(born with gray hair) 2Different colored eyes. Left eye blue/hazel. 3 Unpigmented skin usually on the fofehead. Not true of me. 4 80% Born deaf either in one or both ears from mild to complete deafness. Not true of me. Its one out of 50,-000 births. Sources US. NIH Rare Disorders Division.
The visit went well He gave me a referral to a medical geneticist.

There is nothing wrong with finding out more about what illness run in the family. There nothing wrong with finding out what our may or may not have. Just becareful of what you posted on the internet My sister has a bone disease inherited from our mother.

[mugwort2]

Divine1966. I think in re trospect I should've listed my other WS features. My eyes are different colors, pug nose, thickish brows. Not everyone with WS2 is deaf. It is very high percentage, close to 80% but not 100%.

[mugwort2]

I suspect you're right. For the longest time I've been leery of what I post on FB.