Welcome and thank you for joining! We hope you will feel comfortable to share your story with us and that this site will be a wonderful resource for you! Mary
I feel very lucky that this doctor performed the test he did. I didn't even know he was going to do it. I guess he must of suspected. I can ask him if he knows of any doctor around your area that is familiar with CESD. I met with a nutritionist and she is also very familiar with this disease. She basically said eat chicken (white meat) with out the skin, no milk (use substitute like Almond Milk), if you eat rice eat a little of the brown rice, no fatty foods or anything greasy. I am trying that with a combination of the gym 3 times a week. I have only lost 3 pounds and wish it was more but something is better than nothing.
Hey there Brett. Thanks for taking the time to share your story and leave a comment. Since my diagnosis in 2008 I've been trying to gather as much information about CESD as possible. While I've talked to a few of my doctors and read many articles over the years, one thing that seems pretty set in stone about this disease is that there is no real way to treat it, only to diet and exercise in hopes of reducing the chances of heart attack/stroke later in life. Fortunately, this ongoing enzyme therapy done by Synageva seems to be making some progress, so some hope of future treatment can be found there. Hopefully I will be able to participate in any future trials they conduct.
brett...hanks very much for your response regarding my son's affiction with LAL Solace. i have forwarded your email to him and a three way connect we have.......thanks again and we will keep you abreast......as we hope you do.
Mary Pruitt
Jul 13, 2011
Karen deJong
Welcome Brett and thanks for joining! We would love to hear your story about living with CESD. Karen
Jul 13, 2011
Melissa Aguilar
I feel very lucky that this doctor performed the test he did. I didn't even know he was going to do it. I guess he must of suspected. I can ask him if he knows of any doctor around your area that is familiar with CESD. I met with a nutritionist and she is also very familiar with this disease. She basically said eat chicken (white meat) with out the skin, no milk (use substitute like Almond Milk), if you eat rice eat a little of the brown rice, no fatty foods or anything greasy. I am trying that with a combination of the gym 3 times a week. I have only lost 3 pounds and wish it was more but something is better than nothing.
Dec 15, 2011
Grant Montgomery
Hey there Brett. Thanks for taking the time to share your story and leave a comment. Since my diagnosis in 2008 I've been trying to gather as much information about CESD as possible. While I've talked to a few of my doctors and read many articles over the years, one thing that seems pretty set in stone about this disease is that there is no real way to treat it, only to diet and exercise in hopes of reducing the chances of heart attack/stroke later in life. Fortunately, this ongoing enzyme therapy done by Synageva seems to be making some progress, so some hope of future treatment can be found there. Hopefully I will be able to participate in any future trials they conduct.
Cheers,
Grant
May 13, 2013
michael f massello
brett...hanks very much for your response regarding my son's affiction with LAL Solace. i have forwarded your email to him and a three way connect we have.......thanks again and we will keep you abreast......as we hope you do.
regards,
mike massello
May 18, 2014
Kurt M Freund
I was contacted by http://www.lalsolace.org/profile/JakiJahnke.
She is in need of some assurance
Could you help her
Apr 21, 2015