Friday, October 16, 2009

Making a Turner Syndrome Educational Video

I am making an educational video about Turner Syndrome to place on Youtube etc also a site where it will be able to be ordered on DVD for yourselves and others (friends, family and doctors) It will also be shared with the TSSUS and Magic Foundation.. and it will be based on the A-Z format and I need photos and information that anyone can conjur up that fit any of the following. I will let you know when I am finished so you can share it as well. Please email to me directly at ATTACHED as well as permission to use them in the body of the email thanks! Also if you have any reccomendations on important things about TS that won't fit in any of these categories. I am looking for adults and children with TS and even ts women while pregnant, women pregnant with baby with TS etc.. Baby with TS ultrasounds. For the physical appearance category no photo will be shown in the category unless I am told you would like it shown there. If no photos are submitted for a category it will show commentary and fact info only. No photos will be identified with names or contact info unless submitter request that info be included (only info will be with fitting category, explanation of photo).

A is for Appearance (will be about physical appearance webbed neck, hairline etc. so any photos showing physical appearance traits would be appreciated.. )
B is for Bones (scoliosis, short 4th finger etc.)
C is for Celiacs (Obviously you cannot show me a photo of this but maybe a photo of you if you have celiacs or information on celiacs!)
D is for Diabetes (information or photos of you if you have diabetes, photos using diabetic equipment etc.)
E is for Ears (photos of hearing aids, getting tubes placed in ears anything related to the ear parts of TS)
F is for Friendships (photos of child at social functions, TS functions, school, etc.)
G is for Growth Hormone (photos of child getting GH, or an adult that had GH as a child etc.)
H is for Heart (photos of child before, after surgery anything that relates to heart)
I is for Incidence (maybe a large group photo of girls and women with ts)
J is for Just Us (any and all photos with girls and women with ts)
K is for Kidneys (same as heart any images you have related to kidneys)
L is for Lymphadema (images of swollen feet etc.)
M is for Mosaicism (karyotype images of mosaicism or a photo of your child and information on her type of mosaicism)
N is for NLD (facts and maybe NLD testing info etc.)
O is for Oral (pics of braces, small jaw, palate etc.)
P is for Puberty (pics and info relating to HRT, etc.)
Q is for IQ (school photos, report cards, anything relating to education and learning etc.)
R is for Reproduction (anything related to IVF, infertility, ovaries, pregnancy, pregnant women with TS etc.)
S is for Skin (photos of moles etc.)
T is for Thyroid (info on thyroid or a photo if you are affected with thyroid problems)
U is for In Utero (women pregnant with baby with TS, Ultrasound photos, this includes info and retouched photos, memorial pages etc for those babies who have passed because no matter how difficult it is its a huge reality that should be shared, also pictures of newborns with TS)
V is for Vision (Pictures and info depicting vision issues)
W is for Well being (pictures of adults and older women with TS showing the life expectancy and also quality of life)
X is for X Chromosome (pictures of karyotypes, etc.)
Y is for Y Chromosome?? (pics and info of those with Y material and ovary removal etc,)
Z is for Zzzz's (sleep studies, sleep apnea etc.)


Steve said...

I look forward to viewing what you put together Crystal. I've posted your info in both of the following FB pages.
Hopefully this will help get the information coming in to you.

Misty said...

My name is Misty and I am a 33 yr old woman with TS. I will do what I can. Can't wait to see how it turns out.

Ashlee Cakes said...

Hi, I'm a fellow mom of two little girls with TS. I wanted to say how glad I am that you are doing this, TS is so misunderstood these days! Looking forward to seeing how the video turns out.

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