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

Familial Hyperchylomicronemia in Spain

Hello, my name is Rosa. I was diagnosed with familial hyperchylomicronemia when I was 8 after I suffered pancreatitis. Today I'm 41 years old and have suffered 10 pancreatitis attacks so far. I follow a strict diet and I take omega-3 supplement prescribed by my doctors. Hopefully more specific drugs will be discovered

jill
moderator

Hi Rosa

Welcome to the community. I'm glad you have found us. It sounds like you've had a difficult time with the condition but that you are managing it now with a strict diet.

If you have any questions to ask please use the forum or email me.

Jill

martacampabadal
moderator

Hello rosa,

Welcome to the community. It is good that you found us :)

You know any others affected by LPLD in Spain? The disease is very rare, but there should be some cases more.

Perhaps FEDER, the Spanish National Alliance for Rare Diseases or the Spanish Heart Association could help you get in contact with some others in Spain?

Greetings!

Yes I know my sister who suffers from the same disease. I know by my doctors that there are more cases in northern Spain.

Specifically I think we are 40 cases, 10 of which are children. I created a page on Facebook called familial hypertriglyceridemia association.

It would be good and we gave opinions waved, possible treatments, etc.

I am delighted to know that we are not alone. I'm pleased to meet you.

martacampabadal
moderator

Hello Rosa,

I do not think there is any Spanish association for this disease. I would advise you to contact the Information Service of FEDER so they can include you in their database. Thousands of Spaniards contact them for information every year and if you agree, they can send your contact details to others inquiring about LPLD.
http://www.enfermedades-raras.org/index.ph...

You want your association to be added to the list of patient organizations in this community? It would add here:
https://www.rareconnect.org/es/community/h...

Ok Marta I would like the association to be added here if you can. So far what we've done is to create the Spanish LPLD association's page on facebook but I soon register the association officially.

I will contact Feder to advise me and help. Thank you very much hope to get together and listen to us.

jill
moderator

Hi Rosa, this is fantastic news for patients in Spain.

We have a charity here in the UK www.lpldalliance.org and a facebook page called LPLD Alliance.

With permission I will add your facebook page to our site?

If I can help in any way, please do let me know.

Hola Jill
Por supuesto que puedes agregar la página de facebook. Cuantos más seamos mejor.Asi podremos intercambiar información de esta enfermedad y sus posibles tratamientos. Ademas me gustaría que participarais con vuestras experiencias y comentarios. Daremos de esa forma a conocer la enfermedad a la sociedad.
Un saludo

Hola Rosa,

We are from Argentina and my 7 year old daughter has been diagnosed with LPLD. There is very little community awareness down here, so I will be glad to participate in your forum in espaniol!

We are using a Lab in Valencia to do genetic testing to confirm Julia's disease.

Suerte y saludos

Matias

Hola Matias.Me alegra que se una a mi página de facebook.Seria genial que alli nos diera su experiencia con esta enfermedad para así hacerla más visible a los demás
Está ya Julia diagnisticada de Lpl o aún tienen que confirmarselo en el análisis genético?
En cualquier cosa que pueda ayudar no duden en contármelo.
Me alegra conocer más personas con el mismo problema ya que es una enfermedad muy poco frecuente.
Saludos y Feliz Año