A rare Journey
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9:10
izzy story 4by holliemchugh3,785 views- 4:25
Septo Optic Dysplasia / Optic Nerve Hypoplasiaby TheMAGICFoundation2,725 views
- 10:38
Giants - Part 1 - Pituitary Gigantism and Acromegalyby KeithOlbermannn68,319 views
- 3:20
SOD & ONHby TheMAGICFoundation2,624 views
- 2:58
Acromegaly awarenessby rarediseaseday1,834 views
- 2:01
Ella Geyerby MailTribunenews836 views
- 2:29
Katie Price runs errands in LA 05.02.09by hayleyli20074,463 views
- 0:55
Rare Disease Dayby ariis101295 views
- 4:16
International Day of Rare Diseases, Consigo, Rtp2, 23/03/08by UrbanTales2,489 views
- 1:55
Tonkaya Ryabinaby kotmanul7,880 views
- 8:51
Rare disease and specials abilitiesby rarediseaseday1,188 views
- 4:42
Connaissez vous l'acromégalie?by TheFlowen8,931 views
- 2:54
Loka colocando piercing no septoby mailavigne312 views
- 4:46
Tanya Angus Journalists' Notebookby TheEricWiener1,419 views
- 2:20
Funniest "Blind Moment" I've Hadby WildKatSpeaking2,894 views
- 2:52
Marissa Sasmita - 'Colors of the Wind' to micro-preemie Ayuby gultekdi20,476 views
- 0:40
GREECE TV SPOTby rarediseaseday500 views
- 1:09
Tony is feeling good!by TabbysPlaceSanctuary389 views
- 0:33
Ferdnando Torres speaks for Rare Diseasesby rarediseaseday2,277 views
- 6:29
Spinal Muscular Atrophy and Rare Disease Day Part 1by vitalcsma14,077 views
hi i also have SOD with an undeactive throid and pituatary gland. I was born blind but i regained vision when i was 3 and am now registered partially sighted. I was on growth hormone from age 7 to 17 and thyroxine and hydrocortisone from age 8 til.. well basically for life. If you have any info on specialists in the uk please could u pass them on and if u have any questions also please get in touch. Thank u
MakeUpYourMindGirl1 2 years ago
I also have Septo-Optic Dysplasia! In 2004 I had Transverse Myelitis too. It's another one of those rare things. I had no idea there was a day just for rare diseases/conditions. I think it's kind of cool and I'm kind of disappointed I missed it.
WildKatMagazine 2 years ago
Lisa!! You look wonderful!! How amazed was I when I saw your lovely face promoting this great day!! Best of luck to you!!
richfranklinrawks 3 years ago
Hi,
2 years ago. Where are you living ? I would be great if we could correspond by e-mail. I'm so interrested. You can contact me and found my e-mail on the website fondationlou (via google).
regards
Luc
lucboland 3 years ago
I saw lous story on a L'Arche magazine! I was so excited to see it there, but that was quite some time ago!
ghdcanada 3 years ago
Thanks a lot for this video.
Luc,
Lou's daddy (ONH syndrome too)
Look to our video and tyou will discover another aspect of septo optique hypoplasia.
Regards.
lucboland 3 years ago