5 comment on “Resource Guide January 2013 revision 020513

  1. Nancy Dark Reply

    I want to know if there are any resources for people who are struggling to get a diagnosis? Or any suggestions?

  2. lorraine lopez Reply

    My daughter has lupus and is very depressed. Would like to attend a group meeting with other people to see how they cope with this disease. Her medications have her hair falling out and puffiness of the face and breakouts. She’s a young 26yr old with a 4 &5 yr old to take care of. Any support groups you can tell us about?

    1. Yesica Reply

      We have a small group on an app called group me called lupus life, and its basically a chat group with no judgements, we can get advice and complain about how we are feeling ang cheer each other up

  3. Ernestina Stines Reply

    I was recently diagnosed with Lupus in March and have gone through aggressive treatment including chemotherapy. My Lupus is still flared even after all the treatment with health issues contumely rising (ITP and gastroparesis).
    My mother has Lupus and was diagnosed over 20 years ago. She is not well at all and has been critical in a state several times just recently.
    I need any kind of help available.

    Thank you,

  4. leslie Reply

    I am looking for a rheumatologist that is not hung up on blood work. I have been struggling with symptoms more than three years. Each doctor is positive I have lupus and is gung ho to help me. Then my labs come back totally or almost normal and tney do not want to help me at all. Has anyone had any experience being seronegative? If so, who do you see. I am desperate for help.

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