Forum Discussions (41)

Discussions Replies Latest Activity

Need help to get diagnosis and test for Adult Onset

Hello I'm so happy to be here and hope I can get help from someone here. I am now 47 years old  and I will start out saying a bunch of rece…

Started by Robin Hep

0 Apr 27

Out of state move

We are currently doing treatment at the Children's Hospital here in TX. But, we are considering a move! A big one! Has anyone moved recentl…

Started by Lisa Diaz

0 Apr 5

Canada

Hello Everyone, I am wondering how many people on here are from Canada. We are trying to find out whether or not our daughter is the only…

Started by Lisa G

2 Jan 18
Reply by Lisa G

Searching for information

Our son (4 yrs) was diagnosed recently with LAL-D after 2 years of searching for answers. We are in Texas and they want to start treatment…

Started by Lisa Diaz

14 Jan 11
Reply by Donna Lee

How long are your infusions?

My daughter will be starting her Kanuma infusions soon, and I was just wondering how long the infusions are that you or your children recei…

Started by Lisa G

1 Jan 11
Reply by Donna Lee

News Story

Our local news did a story on our family, and LAL-D. They did an excellent job explaining the disease. I am very happy with how the story t…

Started by Rebecca Trendy

5 Jun 24, 2016
Reply by Rebecca Trendy

High liver enzimes with treatment

Hi, My daughter is receiving 18 months of treatment (Kanuma) as a clinical trial 1mg/Kg.At the moment, cholesterol (HDL/LDL) seems are norm…

Started by Sara Salinas

2 May 22, 2016
Reply by Sara Salinas

Introducing my family

Hello everyone! My boys have been struggling with liver and cholesterol problems for over 9 years now, and it took years of testing to fina…

Started by Rebecca Trendy

19 Mar 11, 2016
Reply by Sara Salinas

Biopsy Results

Hello , my biopsy results came back and I was told the pathologist says I have  LAL D . She told me its very rare . My ast and alt results…

Started by Dorothy

4 Mar 1, 2016
Reply by Dorothy

Please sign my Petition

I just started the petition "HEALTH CANADA: Approve Sebelipase Alfa so that my daughters life can be saved." and wanted to see if you could…

Started by Lisa G

2 Oct 19, 2015
Reply by Lisa G

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