LAL Solace Patient Community
LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support
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Melissa Aguilar
- Female
- Jamaica, NY
- United States
- Blog Posts
- Discussions (16)
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- Photos
- Photo Albums
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Melissa Aguilar's Discussions
My baby has Cancer
Started this discussion. Last reply by Brett B. Jan 26, 2014. 1 Reply 0 Likes
Hi everybody, sorry I have been away for a long time but things took a turn for the worse and I don't mean for myself. On March 21, 2013 we learned that my then 2 1/2 year old son, Brian had…Continue
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
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
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Comment Wall (3 comments)
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.
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.
Dear Melissa,
As part of our ongoing work on Lysosomal Acid Lipase Deficiency (LAL D) Respondent Journey, Market Vision Research is working with Field Global to conduct research about how LAL D impacts patient’s life and how patient’s feel about the medical treatment for this condition. We are interested in patient’s opinions for “LAL D Respondent Journey” for research purpose only. I would like to reassure you that this study satisfies all requirements for a bona fide market research study; there will be absolutely no sales or promotion activities during or resulting from the discussion.
Please help us in this initiative to learn and evolve into a new & advanced medication which can drastically transform the lives of the diagnosed LAL D patients.
In appreciation of agreeing to participate (in case of a patient), following Incentive would be provided.
If you have any questions, please contact us via e-mail at Alia.shaikh@fieldglobal.in
Thank you,
Alia Shaikh
Alia Shaikh|Team Lead- CATI|
| +91-9892326955| alia.shaikh29|www.FieldGlobal.com|
|Your S. M. A. R. T. Research Companion||MULTI - Country Specialist - ASIA, Middle East, Europe & the US|
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