support groups

alishac 21.12.2014 03:19

Have felt so alone this last year and love coming across things like this...There needs to be more of them!! Anyone know of any other? Anyone on Facebook to talk to each other on bad days? Sometimes it's nice to just talk to someone who knows....

bradkovich 29.12.2014 08:18

Hi, My name is Rebecca i have been suffering with chronic idiopathic urticaria angiodema for 16 months , My first episode was horrible and caused me to have anafilixis and hospitalized for 2 days . I was sent home at the time with out a diagnosis. i was forced to stay in bed on steroids and basically no clothes just a sheet on my skin . very itchy. red .painful . swelling.. after visiting a immunologist i was given lots of blood work .bone marrow test to rule out other diseases .. I have talked to my Dr about disability some days i cant wear shoes or put my clothes on she said no problem i take so much medicine its hard to function at work or drive.. but from some research i gather its going to be a fight to get my disability.. anyone out there received disability for this condition???

trish7740 08.01.2015 21:30

Good luck, Rebecca! Please keep us posted if you win. I am in the same place, I'm in my 7th straight unrelenting month now and I can't maintain. I can't anymore. I can't work, I can't take care of my kids, I can't even take care of me :(

healthcoachre 13.04.2015 17:10

Hi there! My name is Renata Muraro and in my company, we are interested in building a community for patients, doctors and families to be able to openly discuss about Urticaria related topics, tell their stories, share their struggles, tips and tricks and just have fun together.

Going through this website, I read each one of your testimonials, which interested me so much. I think it is very brave of you sharing your story, congratulations!!!!

We are looking for men and women, children and families all around the world that are willing to share their stories and engage in our social media channels, helping us to create a strong community and spread good information! In case you are interested, I would love to set up a chat with you, and we could talk about how you can help. You can reach me out at Enable JavaScript to view protected content..

I am looking forward for your contact, just let me know!

mixmag89 16.04.2015 14:12

Hi,

My name is James and I have had Solar urticaria for 2 years now. Summer is almost here and yet again I am trying to find some sort of relief. My skin breaks out into a red rash when exposed to sun. I was thinking of trying this low histamine diet ! Anyone else tried it ?

James

jadelet1997 24.06.2015 06:21

I just discovered that there are sites like this one today after a family member saw the Dr Oz show last night about ICU.. I've suffered for 17 years with only maybe 3 of those years not covered in hives from head to toe. I went all over the country searching for help. Mayo clinic couldn't help either. I used to sit for hours on the computer searching for any kind if info but there was nothing but the definition of the 3 words ICU!! I was told my mom was the trigger because of her being controlling etc etc... My marriage of 17 years together 24 ended because of the illness. I gave up hope after losing everything I loved simply because I couldn't stop from having hives and taking antihistamines that made me sleep through the pain.. I wanted so badly to meet someone like myself so I would'nt feel so alone. I never knew anyone who had this and only my closest friends and family understood my suffering because they witnessed it all. I've never been on a forum or apart of a support group before but this one is what I've actually prayed for!! I'm no longer alone .. Finally people here will know exactly what I've suffered..

sue_hargrave 22.07.2015 10:17

If you are looking for a community online to join, we have a private Facebook page for Chronic Urticaria Patients. There are 5 administrators who monitor the site, and the people are caring and have each other's best interests in heart! If you are on Facebook, type "Chronic Urticaria Support Group (Private)" into your Facebook search area/browser. Ask to join. This is a private group, and we only support and share. No selling of products, etc. over 1,700 people from around the world are there helping each other to live with and understand this disease! See you there!

guia 26.07.2015 23:25

Sue and others, We have an Association for patients in Brazil. Our website is very well done , we have testimonials, stories, news. We have an English page. It wil be a pleasure to have people all over the world. Visit and join us: www.urticaria.org.br or www.guia.org.br See you

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