LAL Solace Patient Community

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

Amy Spade Male Austin, TX United States: Like

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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?: Relative

Comment Wall (4 comments)

At 4:20pm on March 16, 2016, Brett B. said…: Hi Amy, I hope all is well. I am just getting done with work. I am glad that you have reached out. I planned to attempt to contact you tonight anyways. I will try to respond your questions when I get home on my computer.

At 5:26pm on March 16, 2016, Brett B. said…: Hi Amy,

You should not have to wait three months to be tested for LAL D. Any clinic lab can draw the blood and send it to specific testing locations who actually do the testing for LAL D. There are two types of tests that measure the amount of the LAL enzyme that your body is producing. One is a blood draw into a tube with a purple top which is then sent to the labs. The other one is a dried blood spot test where they draw the blood and place five drops on the provided test sheet. You may need a referral from your doctor before the lab does the testing, but that should be fairly easy.

I was diagnosed with LAL D in 2009. At the time, they sent my blood sample to Baylor University in your neck of the woods.

The following website should provide step by step instructions on what they need to do for the blood draw, how it should be shipped, the type of shipping, etc. There are a few other websites out there that list the steps as well.

http://www.laldsource.com

If you are diagnosed with LAL D, I would be more than happy to share my experience being on the medication. I have been on it for almost five years. I started in May 2011.

Please let me know if there is anything else that I can do for you or if you have any additional questions. I know that I had a ton of questions when I was diagnosed and I still have many questions.

If it is more comfortable to communicate through email, I can be reached at:

lalsolace@gmail.com

Thank you and welcome to LAL Solace,

Brett

At 2:23pm on May 10, 2016, Amy Spade said…: Hi Brett,

Thanks for the warm welcome. Still waiting on test results. :)

Amy

At 12:26pm 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.

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