LAL Solace Patient Community

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

Diet for CESD patients

Hi again!
Could you please share diet details your doctors recommend you to follow?
I will appreciate your replies.
Regards, Tanya

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Permalink Reply by Edina Pocsaji on December 23, 2017 at 5:41pm

Hello Tatyana,

my name is Edina from Hungary. I have a 6 years old son, and he is LAL-D. We didn't start yet get Kanuma, because we wait 6 months ago for a government accept the treatment. My son is the first in my country!! Do you fined out any diet, because i didn't see your conversation. Can you help me, what you fined out? Your son get a Kanuma? Thank you your answer!

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Permalink Reply by Tatyana on December 25, 2017 at 1:54pm

Hello, Edina!

Our stories seem to be very much alike. My son is also six years old and we were also the first one in our country. Now there are six patients in total. In spite of this treatment for LAL-D patients with Kanuma has not been yet approved by our government though we were diagnosed in 2016.

As for diet recommendation low-fat diet is recommended. But unfortunatelly diet does not impact much on disease. All patients should get Kanuma as soon as the first signs of disease appear.

I wish health to your son and great patience to you.

If I can assist you on any other issue please let me know.

Regards, Tanya

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Permalink Reply by Sara Salinas on February 27, 2018 at 5:23am

Hi Edina and Tatyana,
I'm Sara from Spain.
My 6 years old daughter is affected by LALD. She is treated with Kanuma since her 3 years old as a clinical trial.
The last month the Spanish Government approved the treatment.
I belong to the only European patient organization specific to this pathology.
I can try to find out some association of your country so they can inform you and help you.
Please, you can contact me at info@aelald.org
Cheers,
Sara