Welcome to lupusfamily.com

July 7, 2007 in Resources | Comments (4)

It is estimated that 1.5 million people in America have lupus. This disease has a profound effect on their lives and on the lives of the people that love them. Lupus is an often misdiagnosed illness that is confusing to many health professionals and misunderstood by the media and the masses. It is essential for the lupus patient to have access to competent medical specialists who are using up-to-date treatment options and medications, and to have a support network of friends and family who are educated and aware of how difficult it is to cope with lupus and symptoms of lupus.

According to the Lupus Foundation of America,

  • Several studies reveal that the annual average cost to provide medical treatment for a person with lupus ranges between $6,000 and $10,000. For some people with lupus, however, medical costs may exceed several thousand dollars every month.
  • Two of three lupus patients reported a complete or partial loss of their income because they are unable to work due to complications of lupus.
  • One in three have been temporarily disabled by the disease, and one in four currently receive disability payments.
  • In a nationwide poll of 1,000 adults conducted for the Lupus Foundation of America, 38% said they are somewhat or very familiar with lupus, while 39% have only heard of the name of the disease and 22% have never heard of lupus.
  • In an another survey, only four of ten young adults ages 18-24 claimed to be aware of lupus, even though the disease often strikes during the childbearing years.
  • While 65% of respondents to this survey claimed awareness of lupus, only 20% could offer accurate basic information about the disease.
  • People with lupus named other family members (84%) and friends (72%) as their primary support network.
  • The survey participants cited pain (65%), lifestyle changes (61%), and emotional problems associated with lupus (50%) as the most difficult factors for coping with lupus.

Lupus impacts an individual on both a personal and economic level. The disease effects them, their families, and their loved ones on a daily basis. This site is dedicated to creating a community of support for lupus patients and their friends and families. It is our goal to provide a forum for discussion of lupus related issues, and to provide a safe haven of support and understanding for everyone whose life is effected by lupus.

Comments (4)

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  1. Comment by Jenny — July 7, 2007 @ 10:57 pm

    I was diagnosed with SLE when I was 15. I did not realize how expensive it is to be sick.

  2. Comment by Michelle — October 8, 2007 @ 5:02 pm

    I found a link to this blog on a discussion board on Facebook. I would like to personally thank you for making this project, and for sharing. I belong to a couple of online support groups ( I have MCTD~lupus-suspect, palindromic rheumatism, and dermatomyositis). But I don’t see alot out there for family and friends of lupies and they really need a lot of support, information, and understanding too. A forum. I have shared this site with my family and friends also on my Stumble Upon account where I raise awareness for lupus as well as get to enjoy my love for photography. OK, enough about me.
    thank you again
    Michelle

  3. Comment by Jeff — October 9, 2007 @ 8:47 am

    Thanks Michelle! If you ever have anything you want to post or discuss, please let me know.

    I had started to question whether or not this site would ever get off the ground so to speak, and you and some other recent readers have really helped renew my hope that we can make a difference here.

  4. Comment by Michelle — October 9, 2007 @ 11:59 am

    Will do Jeff :) I posted your link on both of my online lupus support groups too. I think this is an excellent idea, I know, I’m saying it again but I got excited when I found your site! Husbands/Wives and fam I think really need this.
    Thanks again, and best wishes to you and your wife
    Michelle

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