Rebecca Trendy
  • Female
  • Port Huron, MI
  • United States
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Rebecca Trendy's Friends

  • Nicole
  • Lisa G
  • Sara Salinas
  • Holly Hume
  • c.a.cowan

Rebecca Trendy's Discussions

News Story

Started this discussion. Last reply by Rebecca Trendy Jun 24, 2016. 5 Replies

Our local news did a story on our family, and LAL-D. They did an excellent job explaining the disease. I am very happy with how the story turned out. Feel free to share the story to help get the word…Continue

Introducing my family

Started this discussion. Last reply by Sara Salinas Mar 11, 2016. 19 Replies

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,…Continue

 

Rebecca Trendy's Page

Latest Activity

Rebecca Trendy posted a photo
Mar 14
Rebecca Trendy posted a status
"My boys' doctor is talking about adding cholesterol lowering medication to 2 of my boys treatment with Kanuma. Anybody have any experience?"
Mar 14
Rebecca Trendy left a comment for Zorica Dimitrijevic
"Welcome!"
Oct 8, 2016
Rebecca Trendy replied to Lisa Diaz's discussion Searching for information
"Well, I think I deal like everyone else. You do whatever you have to for your child(ren). My boys have each other, so they don't have to go through it alone. Yes, I have everything times 4, and they each have there own stories, issues, etc. It…"
Aug 1, 2016
Rebecca Trendy replied to Lisa Diaz's discussion Searching for information
"Awesome! We just had treatment today. :)"
Jul 29, 2016
Rebecca Trendy replied to Lisa Diaz's discussion Searching for information
"That's awesome! Will you be heading to a cancer center or having home infusions? We travel to a center, and the nurses have been absolutely wonderful. We pack a bag of snacks and all their electronics. We even do a family board game, and it can…"
Jul 10, 2016
Rebecca Trendy replied to Lisa Diaz's discussion Searching for information
"When you chose to do the ports, that is up to you. It is a ton easier. We waited due to the older two boys being in competitive swim. They didn't want to sit out. We did it toward the end of the school that way they have plenty of time to…"
Jul 4, 2016
Rebecca Trendy replied to Rebecca Trendy's discussion News Story
"Thank you! I thought they did an excellent job. Our Doctor is taking our story to Germany. Hoping we can do more to get the Word out."
Jun 24, 2016
Nicole replied to Rebecca Trendy's discussion News Story
"What amazing coverage!  I had tears in my eyes watching knowing that although it is beyond rare my boy is not the only one.  You have sweet boys!  "
Jun 24, 2016
Rebecca Trendy replied to Lisa Diaz's discussion Searching for information
"They are all doing well. Ast/alt and cholesterol levels are all basically normal now. They have been on the treatment since October. I fear this will effect them in many ways, but not always in a bad. My oldest son just graduated and plans to be a…"
Jun 14, 2016
Rebecca Trendy replied to Lisa Diaz's discussion Searching for information
"I am from Michigan, but I have 4 boys with LAL-D, and they are all receiving treatment.I can try to help you."
Jun 6, 2016
Lisa G replied to Rebecca Trendy's discussion News Story
"That's awesome Rebecca!! The video is great!! I shared it!"
May 29, 2016
Rebecca Trendy replied to Rebecca Trendy's discussion News Story
"Thank you! Anything we can do to educate people on this disease."
May 25, 2016
Sara Salinas replied to Rebecca Trendy's discussion News Story
"Dear Rebecc, Congratulations for this interview, it was amazing!And congratulations for this fantastic family too.Thanks for share this history. Cheers, Sara"
May 23, 2016
Rebecca Trendy replied to Sara Salinas's discussion High liver enzimes with treatment
"Has your daughter been on getting the treatment for 18 months? My boys have seen all the numbers come down, but not completely "normal" but way lower and very close to the normal numbers. They have been getting treatment for 7 months now."
May 11, 2016
Rebecca Trendy posted a discussion

News Story

Our local news did a story on our family, and LAL-D. They did an excellent job explaining the disease. I am very happy with how the story turned out. Feel free to share the story to help get the word out.http://www.clickondetroit.com/health/4-brothers-fighting-extremely-rare-diseasehttp://See More
May 11, 2016

Profile Information

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?
Child

Rebecca Trendy's Photos

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Comment Wall (2 comments)

At 11:37pm on February 27, 2016, Dorothy said…

Hello Rebecca , Are the infusions done only if there is cirrhosis ? Do you have to get them as soon as you are diagnosed ?

At 12:02am on February 28, 2016, Rebecca Trendy said…
I am not a doctor, but what I have learned about the liver is that cirrhosis has 4 stages. Stage 1 fatty liver, stage 2 scar tissue, stage 3 scar tissue with "bridges" and stage 4 is liver failure. I have 3 boys with stage 2, and 1 in stage 3. The liver can heal itself, but they never revert back stages. Plus, the only stage the Kanuma cannot help with is liver failure. So treatments would need to be started before stage 4. I would suggest the sooner treatments starts the better. My son, who in stage 3, was my biggest worry while we were waiting. We had to wait about 5 months and he is doing extremely well. We have only had blood work done after treatments, but they will have repeat CT scans this summer. Not sure yet when they will have repeat biopsies. I am sure a doctor could explain it a whole lot better. But I hope I helped! ☺

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