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Jul 28, 2019, 10:17 PM
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Member Since: Apr 2014
Location: Home
Posts: 8,406
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Quote:
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.
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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.
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What if I fall? Oh, my dear, but what if you fly?
Primary Dx: C-PTSD and Severe Chronic Treatment Resistant Major Depressive Disorder
Secondary Dx: Generalized Anxiety Disorder with mild Agoraphobia.
Meds I've tried: Prozac, Zoloft, Celexa, Effexor, Remeron, Elavil, Wellbutrin, Risperidone, Abilify, Prazosin, Paxil, Trazadone, Tramadol, Topomax, Xanax, Propranolol, Valium, Visteril, Vraylar, Selinor, Clonopin, Ambien
Treatments I've done: CBT, DBT, Transcranial Magnetic Stimulation (TMS), Talk therapy, psychotherapy, exercise, diet, sleeping more, sleeping less...
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