Find people with LPHS Syndrom

Saskima

New Member

Joined : Jul 2013

Posts : 1

Posted 7/3/2013 6:31 PM (GMT 0)

Hello,my name is Sandra
I came across this page on google.. I've been suffering for some time
under LPHS Syndrome!!!Unfortunately,the disease is unknown in Germany with me!!I would love to find someone who can chat with me...I have this feeling that no one understands me with my pain...

I would appreciate any answer

Snowbunny21

Veteran Member

Joined : Jan 2010

Posts : 3557

Posted 7/3/2013 6:42 PM (GMT 0)

Hi there...Welcome to the boards...We are sorry that you have found us and that you have chronic pain but this is a wonderful site that is filled with caring and empathetic people who truly understand.

We used to have a member who posted regularly who also had LPHS but I haven't seen them for some time and haven't seen anyone else mention this lately so you may have to hang around for a bit to see if others post about it.

You will find that even if we don't have the exact same health issue that we all can relate what it's like to live with CP 24/7 and find the best Drs., treatments, medications, and support can take some time. Do you have a Dr. who is helping you now?

Hope you continue to post and share your story if you feel like sharing a bit more about how you got diagnosed and what treatments are working for you that would be great!

straydog

Forum Moderator

Joined : Feb 2003

Posts : 19850

Posted 7/3/2013 7:38 PM (GMT 0)

Hello Sandra & welcome to the forum. To my knowledge we do not have anyone with this condition here at the chronic pain forum. You can use the search feature here at the forum & should be able to pull up some post where it was discussed. I am afraid it will be somewhat outdated. Did you check the kidney forum here at Healing Well?

You are more than welcome to hang out here with us. I know this is a very painful condition and pain is something we all understand because we too suffer with pain.

Anyway, wanted to pop on & say hello and welcome aboard.....Susie

Trudy2

Regular Member

Joined : Dec 2010

Posts : 213

Posted 7/3/2013 8:50 PM (GMT 0)

I searched your condition because I didn't know what the initials stood for. Maybe you will be able to find a specialist close to you by using the links included in the site I have posted below. I don't know if you have ever tried this site before. It is the first time I have ever posted a site before, but I sincerely hope that it helps!

http://rarediseases.info.nih.gov/gard/pages/25/how-to-find-a-disease-specialist#Question1

Obviously you will have to cut and paste as I do not know how to post a hotlink, LOL!

Welcome to Healing Well! As all others posted, you are welcome to vent anytime and there are lots of us that do understand and have gone through the same type of frustrations that you are right now. You have found a great site with us as you do not get judged, and everyone here is really treated like family!

Trudy

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