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Posted by Patri on January 10, 2021 at 6:30 am

<span lang="en">Hello everyone
I am Patri from Spain.
My husband has been diagnosed with lems since June 2020. He started with his symptoms in March and was diagnosed at the time of entering the Hospital.
We have been very lucky, but now is when we are suffering the loneliness of this disease. In Spain we have not contacted anyone who suffers from it and we feel alone and abandoned. My husband (Iosu) is not getting better with Firdapse and I look every day for testimonials from people with lems to find a light.
I have found this page after much searching and I was happy to see that you have answered me.
My problem is the language, but google translator works miracles. ;)
Thank you very much for reading me and sorry for my English.
Above all I would like to contact someone from Spain so that we do not feel so alone.</span>

Mary replied 3 years, 10 months ago 4 Members · 10 Replies

10 Replies

Price Wooldridge

Member
January 10, 2021 at 2:30 pm

Hi Patri! I understand how difficult it is with LEMS. Please tell me where in Spain you live. I will reach out for any other LEMS patients there and get back to you.
Price Wooldridge

Member
January 10, 2021 at 5:04 pm

Also there are a couple of active Facebook support groups you can join if you use that social media outlet. Just search “Lambert-Eaton” and you will find them.
Price Wooldridge

Member
January 10, 2021 at 5:45 pm

@patri Patri here is someone for you in Spain. He has had LEMS since 2014. He would like you to contact him.
Antonio Neito González, 400 miles from Madrid at Guare ñaa Province of Badajoz. You may email him at, [email protected].
Price Wooldridge

Member
January 10, 2021 at 10:52 pm

I’m also told there is a Josep Dalmau, a former professor of neurology at Penn U who knows LEMS and practices. No direct contact information was provided.
Price Wooldridge

Member
January 10, 2021 at 10:52 pm

I’m also told there is a Josep Dalmau, a former professor of neurology at Penn U who knows LEMS and practices. No direct contact information was provided.
Patri

Member
January 11, 2021 at 4:23 am

Hello Price!! thank you very much for the information. We are from Valencia, just east of Spain. I’ve already passed Antonio’s mail to my husband. He’s more depressed and I’m the one looking for people to talk to.
Patri

Member
January 11, 2021 at 4:24 am

we are registered with a Facebook LEMS group, but there is no one from Spain that we know of….
Ashley

Member
January 11, 2021 at 8:11 am

Hey

@patri

Welcome to our group!! Looks like we had a member join this morning that also lives in Spain!

@lauraMaybe you guys can chat and are hopefully pretty close to each other!
Patri

Member
January 11, 2021 at 9:36 am

hello Ashley!!

we are conected in facebook now. thanks !!!

he lives in west and we live in east but is wonderful !!!!!

you are beatiful persons!!!!! 🙂 🙂
Mary

Member
January 12, 2021 at 2:50 pm

Hi Patri

I come here for support for my sister who has LEMS. She is on Fridapse but it does not help enough.

I hope your husband feels the benefits of it soon.

Mary