Melissa Aguilar
  • Female
  • Jamaica, NY
  • United States
Share on Facebook MySpace
  • Blog Posts
  • Discussions (16)
  • Events
  • Photos
  • Photo Albums
  • Videos

Melissa Aguilar's Friends

  • Brett B.
  • Stephanie Dykes
  • Karen deJong
  • Mary Pruitt

Melissa Aguilar's Discussions

My baby has Cancer

Started this discussion. Last reply by Brett B. Jan 26, 2014. 1 Reply

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

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

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

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

Comment Wall (3 comments)

At 11:13am on November 30, 2011, Brett B. 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.

At 2:24pm on May 18, 2015, Alia Shaikh said…

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.

 

  • Patients would be provided with a token of 140 USD for successful interview through telephone.

 

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|

 

You need to be a member of LAL Solace Patient Community to add comments!

Join LAL Solace Patient Community

 
 
 

© 2024   Created by SandorMax   Powered by

Badges  |  Report an Issue  |  Terms of Service