Anyone know of an online support group for young women with Lupus

Discussion in 'Off The Beaten Track' started by harekrishna43, Apr 1, 2011.

  1. harekrishna43

    harekrishna43 Active Member

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    The 28 year old daughter of a good friend of mine suffers from lupus flareups that leave her incapacitated. She is a single mother of 3 young boys and works full time, in the evenings. My friend winds up caring for her grandchildren most evenings after a long day at work and is also quite distressed about what her daughter is going through.

    I thought she might benefit from being able to talk with other people her age who are dealing with similar issues and symptoms. I plan on doing some online research on her behalf but I thought I'd post it here in case anyone has some first hand knowledge or experience.
     
  2. Flatfoote

    Flatfoote Active Member

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    I'm part of an on-line community that has some of the most warm-hearted people I've ever met in one community. There is a thread/topic for nearly everything under the sun, including its original function of talking TV/Reality shows.

    There is a section under the Members section called Community Corner. In that section (under Health Center) is a thread on Chronic Pain/Fibromyalgia, and they discuss Lupus in there too. You can't access it unless you are a member (just more secure that way, as conversations in that area can get pretty sensitive). But perhaps your friend can browse around the rest of the board to get a feel for the place, until they decide if they want to join. http://www.tvclubhouse.com/cgi-bin/forum/discus.cgi?pg=topics

    They also have a Facebook page: http://www.facebook.com/pages/TV-ClubhouseTVCH/152419238147812

    I know TV is a far cry from a specialized Lupus board. But really its the people that make the community so special. And the fact you can talk about anything and everything under the sun there.
     
  3. Aceon6

    Aceon6 Get off my lawn

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    This site seems to be the most active http://www.thelupussite.com/forum/index.php
    Bonus is that it's organized nearly the same as FSU. One minor problem is that doctors and other caregivers cannot identify themselves in their sigs, so you have to wade through a lot of cr@p to find authoritative info.

    If it's verified expertise you're looking for, try these:
    The Lupus Foundation has a board section here
    And WebMD has a section specifically for Lupus here
    Both are great for newly diagnosed people

    Hope this helps, and remember, Lupus is a continuum disease, but the people on the disease specific boards tend to cluster into the newly diagnosed or into the more difficult categories. I find that the folks who are managing well tend to drift away from those boards and over to places like the one that Flatfoote mentions.
     
  4. Ajax

    Ajax Well-Known Member

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    This isn't exactly what you were looking for but it might be very helpful:

    http://www.marksdailyapple.com
    It's a health and fitness site that advocates a specific diet which is aimed at reducing inflammation in the body. A very simple explanation of the diet is that you're supposed to eliminate all potentially inflammatory foods such as grains (what, rice, corn), vegetable oils (soybean, corn, sunflower - olive oil is fine), legumes (beans, lentils, peanuts) and sugar/processed foods. Even going just gluten-free can have a big impact. Many of the followers have reported drastic improvements in their auto-immune disease syndromes. I went in the boards and did a search for lupus. There were numerous threads, e.g.
    http://www.marksdailyapple.com/forum/thread10874.html
    http://www.marksdailyapple.com/forum/thread26482.html
    http://www.marksdailyapple.com/forum/thread11858.html

    Your friend might like to read through this website, both the forums and the site posts themselves. Other terms you could Google are primal blueprint, paleo diet and the paleo whole30. I believe that diet has a huge impact on our health and well-being. Maybe if your friend changed her way of eating she'd get some respite from her syndromes.

    As a disclaimer, I have recently started following the primal blueprint diet myself :) I didn't have any diseases or anything but it has definitely helped me lose weight, the swelling and bruises that I had as a result of my ACL reconstruction surgery disappeared within a couple of days and I just feel better overall.

    ETA: Here's one person who has lupus and reported improvements in her condition after starting a paleo diet:
    http://paleoforlupus.blogspot.com/
     
    Last edited: Apr 8, 2011