[Blindtlk] Responses of Medical Professionals.

Wed Mar 2 23:59:27 UTC 2011

My heart goes out to you both.  I was diagnosed with a rare condition at the 
age of five when  I began my minstral cycle at five.  I spent hours and 
hours at Texas Childrens Hospital in Houston while the doctors looked at me, 
all of them and interns as well as everone else they could find it seemed, 
trying to find out what was wrong with me.
After three days of x rays and exams the doctors diagnosed me with Albrights 
syndrome.  At the time, 1962 there was onl yone other documented case of it 
in the world, in Africa.
Over the next 25 years every doctor I went to argued with me when I told 
them about my going through puberty at 5 and a half, also they always had to 
bring in other doctors to look at me,  I reached my adult height of a grand 
4 foot 9 at the age of 8 and I began wearing the dreaded bra at 8 as well.
Not many doctors knew much f anything about the syndrome but a few of them 
did some research for me and found more out about it.  I actually had an 
indocrinologist who did his doctoral papers on this syndrome, that was 
interesting.
I had been told at 16 that I would ever have any children because there was 
no record of anyone with albrights having kids.
 When I was 36 I got pregnant with my oldest son and I met a really cool 
genetisist who had dealt with children with the syndrome but never adults, 
she actually came in to the room and hugged me because she said I gave her 
something to give the parents of children with the disease hope, 
interesting.
It is not hereditary as far as is known.
Over the years I have had to learn to deal with doctors and other health 
professionals and their strange reactions to the syndrome, I think the 
hardest part is the fact that I was paraded around as a child and made to 
feel like i was a freek, but as an adult I look back and like you, i feel 
like i have developed compassion for others and I am grateful for all the 
information I have received over the years about the disease that originally 
the doctors had none of to give my parents. Jeanette
----- Original Message ----- 
From: "Michelle Medina" <michellem86 at gmail.com>
To: "Blind Talk Mailing List" <blindtlk at nfbnet.org>
Sent: Wednesday, March 02, 2011 4:42 PM
Subject: Re: [Blindtlk] Responses of Medical Professionals.


> Mary,
> Right up my alley this email was!
> As I wrote in the 'to cane or not to cane' message, I was born with a
> very rare birthdefect called a Tessier Cleft. And while I've had 2-3
> experiences where doctors asked me about my vision *I have no vision,
> the cleft runs the length of my face and upinto my nasal cavity and
> where my eyes should have been*, for the most part they do stay on
> track.
> However, having said that, I've had 66 reconstructive surgeries to
> close my face, attempts to repair my hard palate, and surgeries to
> build up bone structure and the like, I was treated like an odity.
> I've always gone to teaching hospitals, that's where my plastic
> surgeon has always worked, all the medical inturns and pre-med
> students and basically any student or doctor who wanted to, has been
> allowed to come and 'look' at me. I've learned over the years to deal
> with it, but 'dealing' with something and 'accepting' that something
> is a certain way are different and I'm feeling emotional pain just
> writing this. For a long time I believed I was part of the 'freak
> show' and once when we were walking past a 'freak show' at a circus I
> joked to my Dad: 'Hey Dad! I should be up there! Wonder how much money
> they make?'
> So it's still part of my life and probably always will be. The only
> thing that makes it better is that I'm learning to lessen its affect
> on my feelings as I get older and encounter more good people then bad.
> Not 'bad' so much as those who lack understanding and would rather
> point, laugh and stare, or, when I was a kid, would rather punch, kick
> and spit on me then get to know me. I went to public schools. I
> wouldn't trade those experiences though, they taught me a height of
> empathy and compassion for others I couldn't have gained had I not
> gone through the surgeries, the schooling and the like.
> Michelle
>
> On 3/2/11, Mary Mc Gee <mmcatitude at gmail.com> wrote:
>> Dear Fellow Federationists;
>>
>>             I've read with interest all the posts about experiences at
>> health care providers' offices.  I have some experiences I can throw into
>> the mix.
>>
>>             First, I'll say that, because the cause of my blindness is
>> albinism, I had a unique appearance that was impossible to hide when I 
>> was
>> younger.  I was a student at the Iowa Braille and Sight Saving School for
>> ten years and, during that time, I went to the University of Iowa for 
>> free
>> eye care-at least "they" called it eye care.  It was more on the order of
>> eye study because every med student, intern, and ophthalmology resident 
>> had
>> to come examines the "albinotic eye" before I received any low vision
>> glasses, etc. that would actually improve what little vision I have.  I 
>> felt
>> like a zoo or circus animal on display because I was a condition rather 
>> than
>> a person.  It hurt a lot and I'm not simply talking about all the lights
>> shining in my eyes, but also the emotional pain it caused.
>>
>>             As an adult I've had some doctors who have been very nice and
>> some who haven't.  The number of nice ones directly correlates with my
>> various degrees-all doctors and staffs are nice now that I put "Attorney" 
>> on
>> their intake forms.
>>
>>             But, when I first came to Des Moines in 1976, visited a
>> neurologist because of migraine headaches.  He spent more time looking at 
>> my
>> eyes than he did taking a history of the headaches.  I went to one doctor
>> whose office staff handed the intake form to my driver too complete until 
>> I
>> complained.  One time, when I went to an orthopedic surgeon's office for 
>> an
>> expert consult to prepare for trial, I was greatly surprised that she 
>> spent
>> fifteen minutes asking about my vision instead of my client's treatment. 
>> I
>> simply told her that, if she billed for those extra minutes, she wouldn't 
>> be
>> paid, because I would deduct that amount of time from my bill back to the
>> client.  She didn't argue and even apologized.
>>
>>             I'm fortunate that I currently have a sensitive, caring group 
>> of
>> physicians.  I'll have to admit, though, that the trauma of the past plus 
>> my
>> attorney's skepticism is quite hard to eliminate when I meet a new one.
>>
>>             The Iowa Department for the Blind has been doing a PR project
>> with health care providers to educate them with the hope that fewer 
>> people
>> will have unpleasant experiences when they need help.
>>
>>             I'd be interested in hearing if any of you, like me, were
>> treated as a medical oddity at any time.
>> Sincerely,
>>
>> Mary L. McGee
>>
>>
>>
>>
>>
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>>
>>
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>
>
> -- 
> "FUCK YOU FOR KILLING ME!!!!" SHAUN MORGAN - "NEEDLES"
> "THESE STAND FOR ME, NAME YOUR GOD AND BLEED THE FREAK!
> I'D LIKE TO SEE, HOW YOU ALL WOULD BLEED FOR ME!" -LAYNE STALEY -
> "BLEED THE FREAK"
>
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