"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…"
LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
Brett Billmeyer's Discussions
My Path to Being Diagnosed with CESD
Started this discussion. Last reply by Melissa Aguilar Jan 24, 2012. 5 Replies 4 Likes
I was diagnosed with CESD approximately 3 years ago at the age of 38. Almost 20 years ago, I found out that I had elevated AST and ALT enzyme levels in the liver, but no one knew the cause. I have…Continue
Brett Billmeyer's Page
Latest Activity
"Hi Grant. I was diagnosed with LAL Deficiency (CESD) in 2009. I have since met, spoken with, and have been treated by many prominent doctors who study LAL Deficiency. When I was first diagnosed, there was very little…"
"Hi Saj,
I am always available to answer any questions that you may have about my experience with CESD. Do not hesitate to email me or post your question on the website. LAL Solace was created to help others affected with LAL…"
"I have had several ultrasounds and have watched the ultrasound screen, but it is hard to tell what they are looking at. They will check the size, shape, and position of the liver and spleen. An ultrasound can detect fat deposits in…"
"Welcome to the website. Please let us know if you have any questions or if there is anything that we can do to help. "
"Hi Jay, welcome to website. I went through a similar process in being diagnosed with CESD. I was misdiagnosed with several other rare disorders before getting an accurate diagnosis from a pediatrician who specializes in genetics. …"
"Hi James, welcome to the site. LAL Solace has been blessed with finding medical advisors who are experts in LAL Deficiency. I have been diagnosed with CESD. I am open to share my family's and…"
"Hi Brett, how are you doing? How have you been feeling these days? I am watching what I eat but could do better. My follow up is due soon with my doctor. I am not sure what to expect. You are the only other person I…"
Rare Disease Day Events! at Washington, DC Area
February 29, 2012 to March 1, 2012
"
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…"
Profile Information
- What brings you to LAL Solace?
- All
- Do you or someone you know have a LAL Deficiciency Disease?
- Yes
- If yes, who is effected by LAL Deficiency?
- Myself
Comment Wall (4 comments)
- At 3:07pm on July 13, 2011,
Mary Pruitt said… - 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
- At 9:00pm on July 13, 2011,
Karen deJong said… Welcome Brett and thanks for joining! We would love to hear your story about living with CESD. Karen
- At 2:41pm on December 15, 2011,
Melissa Aguilar said…
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.
- At 4:12am on May 13, 2013, Grant Montgomery said…
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
