Lipoprotein Lipase Deficiency (LPLD) Community

Meet, discuss & support other patients or families living with Lipoprotein Lipase Deficiency (LPLD). Contribute to topics, or just share what's on your mind.

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sandyketronvowell
moderator

Clinical Trial

If you are interested in joining a clinical trial, this one is OPEN NOW in various locations world-wide.

Our best hope is in this type of participation and in spreading the word.

https://clinicaltrials.gov/ct2/show/NCT026...

sandyketronvowell
moderator

CLINICAL TRIAL - Have you applied, have you heard back about the Trial?
If you are interested in this study and have not heard back from them --- please try to submit your info again... contact patientadvocacy@akceatx.com OR get in touch directly with Alan Gilstrap, who can serve as a liason - AGilstrap@akceatx.com.

6 year old diagnosed with LPLD

Hi everyone,

I am the dad of football loving 6 year old who had a 2nd episode of pancreatitis and the root cause on the deck is LPLD. The docs ordered genetic testing to confirm the source.

The triglycerides went from 550 to 1100 the next day during the hospital stay after eating a little amount of Pasta....

We are still coming to grips with this. My son seems to have fully recovered from the event.

Any advice on what to expect/what to eat and how to adapt will be great?

Also what questions/tests/treatment options should we be asking the doctors? Do you also recommend any experts in the Mass/New England area?

Assuming he follows a low fat diet, what are the chances of the kid having a normal childhood?

--Vish

jill
moderator

Hi Vish, it's great that your son is doing so much better and had no intervention. Phew!

Please consider joining the two facebook discussion groups (if you use facebook). You'll be very welcome.

FCS Support Group based in the US and LPLD Discussion Community here in the UK.

These are the places where you'll be able to access support about how to manage the food that your son eats so that he doesn't have another attack.

If you don't use facebook, feel free to ask questions here on the forum.

Best wishes to you and your son.

Jill

Good news I think. The gene test rules LPLD and hereditary Pancreatitis. Not sure what the cause is now. Lipase after 3 weeks now is 30 and TGC are around 1100.... He gains 3+ pounds on low fat diet.... MRI planned after 3+ weeks.

sandyketronvowell
moderator

Viswanath99 --- did you get my message?
I sent you some contact info.
Please reply via facebook or to my personal email: sandy.vowell@gmail.com

sandyketronvowell
moderator

Excellent RESOURCE for Medical People & Patients

Guys,
If you don't know, there is an excellent booklet available now that gives MUCH INFORMATION about the many faces of FCS, the variations of the disease, the symptoms, how to talk to your doctor...

Please go to the website and download a copy to have with you when you talk to any of your people who are on your team!

https://fcsfocus.com/diet-lifestyle/

Sandy Vowell
Living WELL with Type 1 Hyperlipoproteinemia (Fredrickson's) since 1960!!!!!!!

Can LPLD lead to a stroke?

I am a 62 year old male and have been suffering from high triglycerides for the past 10 years. I am always having pancreatitis as well as enlarged liver. My triglycerides typically run around 1900 - 2200. My family physician has had me on medication but nothing seems to lower my trig. He said I am a train wreck waiting to happen. Can this disorder lead to a stroke or heart attack? Am I in danger of dropping dead in an instant? I do eat a lot of junk food and I drink beer. Would changing my diet help me any?

Hi,

If you are having LPLD, then you are having it for 62 years now. If LPLD leads to heart attack or stroke, it won't wait for so long.

That said, I do recommend you to change your diet and limit your fat intake. In this case, we want to avoid pancreatitis. We don't want the acute attacks to damage the pancreas too much so that acute pancreatitis turns into chronic.

I am a LPLD patient who suffers permanent damage of my pancreas and you don't want to head this way.

:D

https://www.facebook.com/fightFCS/

Hi,

If you are having LPLD, then you are having it for 62 years now. If LPLD leads to heart attack or stroke, it won't wait for so long.

That said, I do recommend you to change your diet and limit your fat intake. In this case, we want to avoid pancreatitis. We don't want the acute attacks to damage the pancreas too much so that acute pancreatitis turns into chronic.

I am a LPLD patient who suffers permanent damage of my pancreas and you don't want to head this way.

:D

https://www.facebook.com/fightFCS/

jill
moderator

Hi, heart attacks and stroke are caused by high cholesterol, which is why people with LPLD/FCS are not at risk from these as usually our cholesterol levels are normal.

High triglycerides can leave you at risk of pancreatitis so if you can manage to lower them it can be nothing but good!

I was wondering if you had managed to make any changes to your diet and how that was going?

Check out the LPLD Alliance website

http://www.lpldalliance.org/support/self-m...

for an approach to living with a very restricting fat intake.

I'm not clear if you have LPLD/FCS so you may not need to be as restrictive as others with the condition, but it might give you a new way to approach your eating.

Feel free to private message me if you would like.

jill
moderator

Urgent! Patient Generated Survey on the Burden of Disease closes midnight 1st May

The FCS Foundation (FCS is the umbrella term for LPLD and its related conditions, https://www.livingwithfcs.org/) has created a survey for anyone living with or caring for someone who has FCS.

Anyone with the condition is welcome to take it, even if receiving drug therapy through a clinical trial.

The end result will be a report that will be published and presented to the FDA, but more exciting will be the ability to use the results to raise more awareness for all of us everywhere.

Time is limited to get your voice heard - the survey closes at midnight on May 1st. Please see the call to the survey from Lindsey Sutton, Co-Founder of FCS Foundation.

Hello FCS Community! Have your voice be heard by the FDA in this patient led survey. You're invited to share your experience living with or caring for someone who has FCS by answering a few questions about the day to day reality of living with this disease. Feedback will be sent to the FDA to compliment the FCS Foundation's recent visit about the patient experience and to help them understand the burden of disease and unmet medical needs of our community.

https://www.surveymonkey.com/r/RG7VTBC

There are 36 questions which can be answered in as much detail as you wish. Please be aware that if you leave the survey your information will be lost and you will need to start again.

Lipoprotein TESTING

Hi, I was wondering if anyone has had some sort of test done in regards to this actually illness. I had a test done around 6/7 months ago but they still haven't received the results. It takes a long time to get the results apparently..

Hi, I did the test for the following Genes
LPL, APOA5, APOAC2, LMF1 and GPI-HBP1 and the defect was only in APOAC2 gene. According to what I understood from my doctor, my body produce the LP lipase but it is not active and the APOAC2 is in charge of activating the lipase. Note: I did the test in london end of 2015 and was diagnosed in 1984.
My doctor prescribed Lopid 600 for me but i sure it has zerof effect so i stopped since there was no change in my TGL.

jill
moderator

Hi Rayaad, do you manage to keep well and how much fat do you eat each day? I'm curious to understand the differing levels of ability to metabolise fat we all seem to show,which I can't help but think must be down to which genes are causing the problem. When you were diagnosed in 1984 what were you told you had and which hospital were you seen at? (Sorry for all the questions!)

Hi Jill,
I am originally from Sudan and my father was doing his residency at London hospital which is the place where i was diagnosed with hyberlipidemia tybe 1 when i was 3 years old. We moved back to Sudan after one year and i was on strict diet of 15 g of fat per day. As for now, i am not that much responsible in keeping strict diet due to the nature of my work where i travel almost every week however when I am home i eat a max of 20 g per day. I did a test 2 years where it showed that my body produces the lipase and i always thought that i had a bad LPL gene so this is why i went to London by end of 2015 to do the genatic testing. I went back to my docror in Saudi Arabia (where i am living now) and showed him the result and the defect in APoac2 and he prescribed for me Lopid 600 as i mentioned earlier. I tried to google and researche if Lolid works with my exact case (APoac2 defect) with no luck. On anonther note, i can not get my TGL these days below 500 no matter how hard i tried to stick to my diet.

LPLD and pregnancy

I was diagnosed 2015. Till then I didnt know. Before that my pregnancy was very complicated but managed in ICU. Then I got pancreatitis and was in ICU. Now I am on drugs.... diet of course....tight ....

jill
moderator

Hi Dinithi, that all sounds very scary. I hope you and your baby are now doing well?

I'd love to know a lot more about the circumstances of your diagnosis, how you're managing with the new fat restrictions and what drugs you are on.

I see that you're from the UK. It would be good to know whereabouts and which doctor you are seen by.

Also, how did you find us?!

If you'd rather not answer these questions on the forum then please add your email address so that people whose 'friendship' you accept' will be able to contact you privately.

Jillx