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 have been high for months and I am very scared and would lik to hear peoples stories . I am now awaiting genetic blood test to confirm this . From what I read there is no cure or treatment ?

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Hi Dorothy- welcome to LAL Solace!

I'm Donna Bernstein, a genetic counselor. I'm also involved with LAL Solace and saw your message.

Please feel free to contact me at 917-306-8312 if you would like to discuss anything regarding genetic testing or LAL-D.

You may have already learned about the treatment from Brett, but here are some contact numbers in case they are helpful.

If you would like to learn more about the treatment please contact Ali Malinowski. She is from patient support at Alexion, the company that makes the enzyme replacement therapy called Kanuma (and she is also a lovely person)!
mobile 508-577-2230
email MalinowskiA@alxn.com

The number for One Source, the division at Alexion that helps with logistics and insurance is below- in case you need this in future.
1-888-765 4747

I am glad that you are part of our community and are taking steps to empower your health and well being!
Best wishes,
Donna

Thank you very much Donna !I will definitely take you up on the help!

Donna Lee said:

Hi Dorothy- welcome to LAL Solace!

I'm Donna Bernstein, a genetic counselor. I'm also involved with LAL Solace and saw your message.

Please feel free to contact me at 917-306-8312 if you would like to discuss anything regarding genetic testing or LAL-D.

You may have already learned about the treatment from Brett, but here are some contact numbers in case they are helpful.

If you would like to learn more about the treatment please contact Ali Malinowski. She is from patient support at Alexion, the company that makes the enzyme replacement therapy called Kanuma (and she is also a lovely person)!
mobile 508-577-2230
email MalinowskiA@alxn.com

The number for One Source, the division at Alexion that helps with logistics and insurance is below- in case you need this in future.
1-888-765 4747

I am glad that you are part of our community and are taking steps to empower your health and well being!
Best wishes,
Donna
Hi my name is Holly. My son tristan was diagnosed with Lal d when he turned 6 but we started are diagnoses journey when he was 5. He had a liver biopsy at 5 and has stage 2 scarring on his liver. He has been getting treatment since he was 7. We just started the Comercial drug this month he has had two treatment of that. He has been doing great with everything. If you have any questions I would love to help you in any way I can.

wow great to hear , they told me I didn't have any scaring but did see some inflammation and certain changes which she really didn't explain too much
 
Holly Hume said:

Hi my name is Holly. My son tristan was diagnosed with Lal d when he turned 6 but we started are diagnoses journey when he was 5. He had a liver biopsy at 5 and has stage 2 scarring on his liver. He has been getting treatment since he was 7. We just started the Comercial drug this month he has had two treatment of that. He has been doing great with everything. If you have any questions I would love to help you in any way I can.

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