"Yay! I got my bracelete and I wear it with pride. Thank you Mary and the LAL Solace community."
LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
Melissa Aguilar's Discussions
My Status with CESD/LAL
Started this discussion. Last reply by Melissa Aguilar Apr 16, 2012. 2 Replies 0 Likes
I have been away for a while but am back! I have been sick and we are trying to find out what is wrong. Besides my liver and spleen being enlarged, I now have a small nodule on my thyroid, I have…Continue
Are you looking for a specialist for CESD?
Started this discussion. Last reply by Mary Pruitt Feb 27, 2012. 1 Reply 1 Like
Hi everyone, I found this Powerpoint presentation on my doctors' website. He has 53 patients with CESD out of 300 (Late on-set-LAL Deficiency). If you live in New York I advise anyone with CESD to…Continue
Living with LAL Deficiency....now what?
Started this discussion. Last reply by Melissa Aguilar Dec 15, 2011. 3 Replies 1 Like
I am 31 years old and I found out I had LAL Deficiency on November 15, 2011. After years of various types of surgeries (gallbladder, appendix, uterus and cysts) and numerous years with the doctors…Continue
Melissa Aguilar's Page
Latest Activity
"Hi Karen, I am very happy that your daughter is doing so much better. I also have CESD and it is very scary being diagnosed and just not knowing. I thank my lucky starts for this site and the people on here. I myself am working on…"
"Thank you, I tried looking online but only saw for Wolmans Disease as well. I guess we will find out if I was approved soon enough. Thank you for helping me with this Mary.
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"Thank you so much Mary! God bless you for all that you do for us!"
Mary Pruitt replied to Melissa Aguilar's discussion My Status with CESD/LAL"I am so sorry to hear you have been having such a hard time. If you don't mind, I will contact our three medical advisors with your story and see if there is anything at all they can do. Hang in there! I will do whatever I can to help! "
"Does anyone know if CESD and its complications qualify to Social Security Disability."
"I'm sorry I missed this survey Mary. I was sick."
My Status with CESD/LAL
I have been away for a while but am back! I have been sick and we are trying to find out what is wrong. Besides my liver and spleen being enlarged, I now have a small nodule on my thyroid, I have extreme pain on my abdomin (lower quadrant) I have weakness in my right leg and my right arm and rely on a walker. I can only walk short distances and rely on my husband to help me. I have PT 3xs a week at home as well as a nurses aid. I have never found myself in this bad of shape. I thought I…See More
"Melissa Aguilar
9013 139th Street
Jamaica, NY 11435
LAL affects my life in a big way. I think about my children and when will be the last time I say goodbye to them. It affects my health. I am sick of being sick. I look forward to…"
Mary Pruitt replied to Melissa Aguilar's discussion Are you looking for a specialist for CESD?"Thank you so much for sharing this information Melissa!"
"Hi Mary, I would love to see a walk happen for our community. I think it is very important we all get involved. "
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 (2 comments)
- At 11:13am on November 30, 2011,
Brett Billmeyer said…
Hi Melissa, I am so glad that you have found this website. Thanks for responding to my Path to Diagnosis wall. I have responded to you on the same page. Please let me know if you have any questions. I am very comfortable with sharing my history with Cholesterol Ester Storage Disease. My goal is to continue to educate others about what I have been through before being diagnosed as well as what I have been going through since being diagnosed. I have met some doctors who did not know anything about Cholesterol Ester Storage Disease and were not willing to do their homework. I do know that there are several great doctors who have done lots of research on LAL Deficiency out in your area. I have spent some time out in NYC and have met a quite a few doctors who are very passionate about finding a treatment for LAL Deficiency.
- At 1:00am on December 2, 2011,
Dina Kalaty said… Hi Melissa. I'm glad you have found this website. I wish you well and let us know if there's anything we can help you with.
