6) February 11, 2012 - 23:38 Name: Susana Location: Buenos Aires ARGENTINA E-mail:suvila180700@hotmail.com Comments: Quisiera saber si puedo comunicarme con otros pacientes en español. Esta enfermedad y sobre todo sus secuelas nos marcan en muchos aspectos y creo que el compartir la experiencia de convivir con esta situación puede ayudarnos mutuamente. Por mi parte, se me hace difícil hacer entender a mis seres queridos que esto es un síndrome, que no se sabe la causa y por lo tanto tampoco se sabe la cura. Ya he dejado de preguntarme por qué a mi. Ahora solo convivo con lo que tengo y espero lo mejor dentro de mis posibilidades. Espero que esto le sirva a alguien . Saludos
(I wonder if I can communicate with other patients in Spanish. This disease and its consequences we all make in many ways and I think that sharing the experience of living with this situation can help each other. For my part, I find it hard to talk to my loved ones that this is a syndrome, no one knows the cause and therefore no known cure. I've stopped wondering why me. Now I live with only what I have and hope for the best within my means. I hope this helps someone. regards)
5) February 3, 2012 - 19:30 Name: Tara Location: Staten Island, NY E-mail:tkiel1024@gmail.com Comments: This website is really informative. I'm still trying to figure out how to deal with this diagnosis and how it effects my family and myself. This seems to be the only place where I could find people who would understand what I'm going through. I'm lucky to have found this site.
4) January 12, 2012 - 16:20 Name: Kayley Location: England E-mail:kayleeyjay@hotmail.co.uk Comments: This websites very useful to me, but i didn't manage to find anything on pregnancy and the contreceptive pill? Also Is there anyway you can contact other people through here who have PRS? :)
3) January 9, 2012 - 23:05 Name: Leah Location: Silicon Valley, Ca E-mail:Leahmartinez130@yahoo.com Comments: This connection was very useful not only for myself but my family . I know little about PRS but was dx in 2005 with very little insight on what to expect ,if anything in the coming years. I recently have had an onset of headaches that are dominantly on the affected side. I am interested in learning more about this disease though I have had it since about age 15. The disease has not progressed as I can see visually but am concerned that it can at a later age. Any help on this would be much appreciated. My physician is not an expert in this area by any means.
Best, Leah
2) January 8, 2012 - 21:23 Name: Tiffany Location: Nashville, TN E-mail:tiffany.bierer@effem.com Comments: Diagnosed with Parry Romberg late in life (44 yr old) although I have had signs for years and nobody knew what was wrong
1) January 1, 2012 - 11:06 Name: Marilyn Location: Iowa USA E-mail:rombergs@hotmail.com Comments: Happy New Year Everyone! May you have a healthy happy year!
Name: Susana
Location: Buenos Aires ARGENTINA
E-mail: suvila180700@hotmail.com
Comments:
Quisiera saber si puedo comunicarme con otros pacientes en español. Esta enfermedad y sobre todo sus secuelas nos marcan en muchos aspectos y creo que el compartir la experiencia de convivir con esta situación puede ayudarnos mutuamente.
Por mi parte, se me hace difícil hacer entender a mis seres queridos que esto es un síndrome, que no se sabe la causa y por lo tanto tampoco se sabe la cura.
Ya he dejado de preguntarme por qué a mi. Ahora solo convivo con lo que tengo y espero lo mejor dentro de mis posibilidades. Espero que esto le sirva a alguien .
Saludos
(I wonder if I can communicate with other patients in Spanish. This disease and its consequences we all make in many ways and I think that sharing the experience of living with this situation can help each other. For my part, I find it hard to talk to my loved ones that this is a syndrome, no one knows the cause and therefore no known cure. I've stopped wondering why me. Now I live with only what I have and hope for the best within my means. I hope this helps someone.
regards)