Introducing my family

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, 14, 12, & 10) have LAL D. We started treatment in October 2015, and we are absolutely thrilled to see the results! I would love get to know each of you and your stories. How everyone else is coping?

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Permalink Reply by Lisa G on February 28, 2016 at 4:32pm
Apparently it didn't email me with your response. Thank you Rebecca, I really appreciate it! Teaghan's specialists are in contact with the manufacturer of Kanuma, but still have no expected date yet or trial yet. The doctor said that I need to join groups and advocate for myself and I am doing as much as I can, but I don't know who else I can call or write. It is such a helpless feeling. I started a petition ( https://www.change.org/p/health-canada-approve-sebelipase-alfa-so-t... ),but it hasn't taken off yet.
Permalink Reply by Holly Hume on February 29, 2016 at 10:27pm
Hi my name is holly. I havn't been on in a while but thought I would hop on today being rare disease day. My son tristan who is 9 now has Lal d. He had been on the trial since he was 7 and has done great. We found out before he started yed the trial (he was 5) that he had stage 2 scarring on his liver. He has a medi port for almost two years now and I love it. If so much easier for him and we also do home treatment so that's makes it nice quick access. We just started the Comercial drug this month he has had two treatment of that. If you have any questions I would be happy to help.
Permalink Reply by Lisa G on February 29, 2016 at 11:20pm
That is great that your son has started treatment! How is he feeling with it?

I will write down some questions and send them to you if that's ok?

Thank you very much for your help, I appreciate it.
Permalink Reply by Holly Hume on February 29, 2016 at 11:28pm
He feels great. Sometimes he complaints of a headache a few days after but that every one in a while. Other than that he does good. Yes you message me or I can give you my email as well. Anything to help.
Permalink Reply by Lisa G on March 1, 2016 at 7:18am
That is great that there is not a lot of side effects! Thank you Holly, I will be in touch!
Permalink Reply by Holly Hume on March 1, 2016 at 7:30am
Everyone is different for the side effects. I have heard of some side effects but not a lot. I know my son does have to carry an EpiPen on him all the time just in case if for some reason he has a problem but so far he hasn't had any problems. He's been doing really great with medicine.
Permalink Reply by Sara Salinas on March 11, 2016 at 5:01am

Hi everyone,
My daughter is 4 1/2 years old have LAL D. The diagnosis took 18 months to arrive :-(
Nowadays she is in a clinical trial since november 2014 in Spain.
Now she has a normal liver size, and good cholesterol but not yet the liver enzymes and she has scarring on his liver.
During the two-hour infusion she is fine (a little bit bored). When it ends she leaves happy the hospital.
Right now we are waiting for negotiations of Alexion and the Spanish Government so that patients have access to treatment.
There are two kids 10 year old who are not in the clinical trial and they are waiting several months the approval to treatment before the Kanuma be marketed.
In January 2015 my husband and I decided to create the LAL D Spanish Organization (www.aelald.org) because did not exist in Europe.
We try to act so all patients have access to treatment.

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