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| Name: | just checkin |
| Homepage URL: | http:// |
| Comments: | just checkin |
| Name: | Marisa |
| E-mail address: | hemo.site@caramail.com |
| Homepage URL: | http:// |
| Comments: | Hi! I am an hematologist interested in neutropenia. I want to know how many of patients of SDS have neutropenia and what kind of neutropenia they suffer. I work in Uruguay and Argentina, south american countries, where the disease is not yet diagnosed. I really appreciate all your informations. |
| Name: | isa |
| E-mail address: | isdespres@club-internet.fr |
| Homepage URL: | http:// |
| Comments: | Our son has the schwachman-Diamond syndrome (I'm french and I'm sorry for my bad english). He's 2 years old. I'd like to know if the problems with feeding are commun in that desease because it's very hard for us to feed "normaly" our son.
I'm not sure to understand how this "website" works but I nevertheless try to contact you ! Amicalement Isabelle |
| Name: | NATHAN CANTER |
| E-mail address: | PLC318590@AOL.COM |
| Homepage URL: | http:// |
| Comments: | HELLO, I AM 26 AND HAVE SDS . IVE HAD MANY PROBLEMS THROUGHOUT MY LIFETIME BUT AT PRESENT I AM WORKING AND DOING OK . I ALSO HAVE APLASTIC ANEMIA OF WHICH IVE BEEN TREATED SINCE 1990 WITH ANADROL 50 MG A DAY WHICH HAS BEEN A LIFE SAVER FOR ME . MY COUNTS ARE ALL OK AND DOING OK OTHER THAN HAVING SOME SIDE AFFECTS OF THE DRUG (MY GOOD CHOLESTEROL IS LOW) GOOD LUCK TO ALL OF YOU OUT THERE AND EMAIL ME IF YOUD LIKE K BYEEEEEEEEEEEEEE |
| Name: | montse |
| E-mail address: | montse969@hotmail.com |
| Homepage URL: | http:// |
| Comments: | hola tengo un niņo con el sindrome de shwachman-diamond. Aqui en espaņa debe ser el unico caso. Ahora juan tiene 2 aņos y bueno esta bastante bien. Nos gustaria hablar con alguien que pudiera intercambiar experiencias con nosotros somos bastantes nuevos en esto. si fuera en espaņol mejor
Muchos besos |
| Name: | Mike |
| E-mail address: | jetlagmike@yahoo.ca |
| Homepage URL: | http:// |
| Comments: | Well, I found you on here before out of the blue, I'm hoping it works again. It's funny...you can still read our past posts, and feel the desperation in them....iheartuc |
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| Name: | Trudy. |
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| Comments: | I have a cousin, age 27 who was diagnosed with SDS at an early age but was well, with no apparent symptoms until a few weeks before xmas 2002 when she fell ill and they now need to do a bone marrow transplant.
We of course are devestated and want to help in any way possible. We hold out hope for a donor as they have told her it will possibly lead into leukaemia if left for and longer than 3-6 months. |
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| Name: | Ellen |
| E-mail address: | Ellen969@yahoo.com |
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| Comments: | This is really a fun website |
| Name: | me |
| Homepage URL: | http:// |
| Comments: | please - when you do check this - email me at cj322@hotmail.com
email.com doesn't work ... |
| Name: | me |
| Homepage URL: | http:// |
| Comments: | I emailed you. At mestey@mail.com...
Hoping you got it. |
| Name: | Mike Estey |
| Comments: | Just a quick note to say my email is not working so if you want to talk.....I check this from time to time....so let me know.... |
| Name: | Mike Estey |
| Name: | simon |
| E-mail address: | simon@yahoo.com |
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| E-mail address: | adrian@yahoo.com |
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| Name: | Happy New Year |
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| Name: | Catrina Howard |
| E-mail address: | trinket74@yahoo.com |
| Homepage URL: | http:// |
| Comments: | I am 28 year old and was diagnosed with Shwachman Syndrome at about 2 or 3 years old. I feel that I am doing well - even with the annoying chronic infections and dermatitis issues that I have. I am a junior in college (went back again...lol) and have 2 absolutely beautiful children who fortunately do not have the syndrome.
I recently found the communities out there for people with this syndrome and the wonderfully patient parents of the children diagnosed. Please feel free to e-mail me if you would like, I would love to talk to you. ~Catrina~ |
| Name: | jt pinney |
| E-mail address: | gyropyro1@aol.com |
| Comments: | thanks you realy helped me and my "sick" girlfriend. |
| Name: | Joe |
| E-mail address: | Joe262@yahoo.com |
| Homepage URL: | http:// |
| Comments: | Good site, keep on running ;-) |