LAL Solace Patient Community

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

Jaki Jahnke Female green bay WI United States Minor Outlying Islands: Like

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what were your first steps??

Started this discussion. Last reply by Lisa G Jul 1, 2015. 1 Reply 0 Likes

Hello all, I am brand new to this page and I am learning the ropes. I am looking for some support and help. What was everyone's first steps? What foods did you eat that yiu found helpful?

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What brings you to LAL Solace?: Education, Support, Sharing, Research, 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 6:18am on April 21, 2015, Kurt M Freund said…: Please contract Brett Billmeier for more information.

At 4:47pm on April 21, 2015, Brett B. said…: Welcome to LAL Solace Jaki, I just flew into Houston, TX and preparing to present to a group of physicians on behalf of those of us who are affected with LAL Deficiency/CESD with the hopes to continue to raise awareness about this disease. If you have yet to do so, you may wish to look at the www.clinicaltrials.gov website for information on the extended study sponsored by Synageva. I have been participating in the trial for over four years and have seen a significant difference in the pathological slides of my liver. The first time that I had a biopsy of my liver was in 2007. It should that I had fibrosis and a significant amount of fat. I had another biopsy done of my liver this past December which shows that the majority of the fat and fibrosis has been repaired. If you would like, I can send photos of my before and after pictures of my liver.

If you are interested in the possibility of participating in the clinical trial, I would be more than happy to share my experience with the trial and how it has affected me personally. I do not try to persuade others to participate in the trial. I only provide them with my personal experience with the trial and allow them to make their own informed decision.

As mentioned earlier, we have access to many of the top doctors who study LAL D. If you have any questions, I can ask these doctors their opinions. I give a presentation to a group of doctors this evening and tomorrow afternoon in Houston, TX.

Brett

At 12:33pm 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.