LAL Solace Patient Community

LAL Deficiency (Lysosomal Acid Lipase Disease) & Wolman Disease patient support

Rebecca Trendy Female Port Huron, MI United States: Like

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News Story

Started this discussion. Last reply by Rebecca Trendy Jun 24, 2016. 5 Replies 0 Likes

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 turned out. Feel free to share the story to help get the word…Continue

Introducing my family

Started this discussion. Last reply by Sara Salinas Mar 11, 2016. 19 Replies 1 Like

Hello everyone! My boys have been struggling with liver and cholesterol problems for over 9 years now, and it took years of testing to finally get our dignosis this past May. All four of my boys (17,…Continue

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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?: Child

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Comment Wall (3 comments)

At 11:37pm on February 27, 2016, Dorothy said…: Hello Rebecca , Are the infusions done only if there is cirrhosis ? Do you have to get them as soon as you are diagnosed ?

At 12:02am on February 28, 2016, Rebecca Trendy said…: I am not a doctor, but what I have learned about the liver is that cirrhosis has 4 stages. Stage 1 fatty liver, stage 2 scar tissue, stage 3 scar tissue with "bridges" and stage 4 is liver failure. I have 3 boys with stage 2, and 1 in stage 3. The liver can heal itself, but they never revert back stages. Plus, the only stage the Kanuma cannot help with is liver failure. So treatments would need to be started before stage 4. I would suggest the sooner treatments starts the better. My son, who in stage 3, was my biggest worry while we were waiting. We had to wait about 5 months and he is doing extremely well. We have only had blood work done after treatments, but they will have repeat CT scans this summer. Not sure yet when they will have repeat biopsies. I am sure a doctor could explain it a whole lot better. But I hope I helped! ☺

At 12:28pm on October 13, 2018, James Pollard said…: Good Day,

How is everything with you, I picked interest on you after going through your short profile and deemed it necessary to write you immediately. I have something very vital to disclose to you, but I found it difficult to express myself here, since it's a public site.Could you please get back to me on ( mrjamespollard@yahoo.com ) for the full details.
Have a nice day
Thanks God bless.