General Medicine

» lou44 - New lupus site

Hello all,
I am 31 years old, a lupus patient myself, and have recently started a new lupus web site. I've created this web site with the hope that it will encourage more young people to get involved, speak up, and not be afraid to discuss their issues with lupus. Despite the fact that mostly young people get the disease, it seems to me that young people's stories are not well represented in the available literature. So I wanted to begin to establish a community for younger people with the disease (along with their families) so that they would feel less intimidated to speak up.

I am hoping to eventually compile the stories I collect into a book which will be published and distributed to a larger audience. Please feel free to visit the site and share your thoughts and your stories! The site is www.lupusvoice.com.

-- posted by lou44

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» Elaine Moore - New lupus site

In response to New lupus site posted by lou44:
Hi Lou,
Thanks for sharing information about your website. It's an excellent resource. You're absolutely correct in that the literature is lacking when it comes to anecdotal information about younger patients and the innovative ways in which they manage their symptoms. If I can help you in any way please let me know. Best to you, Elaine

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» lou44 - New lupus site

In response to New lupus site posted by daisyelaine:
Hello Elaine,
Thank you so much for your response. (This is actually Stacy from the site; I just use lou44 as my handle. ;)

I really appreciate your offer to help out. I am actually unsure about how to effectively reach the people who need the resource. I have sent it to my friends and family, who have in turn sent it to anyone they think may be interested. Other than that, I have attempted to place it on lupus discussion boards (where allowed), and I have written the LFA and Lupus International. Do you have any other ideas about how to reach my target audience? Any ideas you have would be greatly appreciated!
Thanks again,
Stacy

-- posted by lou44

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» Elaine Moore - New lupus site

In response to New lupus site posted by lou44:
Hi Stacy,
Your best bet is to join a lot of different lupus boards like ones here or at mediboard or about.com. If you do a search you should find around 20 or more groups with boards. Then start participating or lurking to see if the board is a good fit for you. If you have enough info or personal experience you should be able to help others and you can also learn a lot.
Over time, at least a few weeks, you'll get to know people and you'll be hearing from some young people and also their parents. You can ask them to share your stories and when you're known on the boards you can post a request for stories from anyone on the board.
Besides your links to websites you want links to information from articles--and yes you can freely link to any of my articles---from a few sources, and you'll want to regularly update them.
You probably also want to join the American Autoimmune and Related Disorders Association, www.aarda.org For a nominal annual fee of $25 you'll get the best newsletter on autoimmune diseases in print with info on clinical trials, therapies etc. Recent articles have been on oral contraceptive --the newest views and the role of stress in lupus.
You have a very worthwhile project going and should be able to provide a good service for others if you put the time into it.
Be sure to check out the government sites like NCCAM so you can keep up with complementary medicine. Best, Elaine

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» lou44 - New lupus site

In response to New lupus site posted by daisyelaine:
Thank you, Elaine. You have made some excellent suggestions which I'll definitely be checking out. And I will continue looking at lupus boards as you suggest. Thanks again!
Stacy

-- posted by lou44

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» ProMommy - new & nervous

I just learned I have Lupus, I had a miscariage in Sept. and am expecting again. 7 wk.s There is a blood clot in my uterus. I have mouth ulcers, an itchy rash all over my sides and back, my hands are SO swollen my knuckles are dreadfully painful. I have Raynaud's I never knew all these things were connected.
I'm feeling a little nervous about all this. It's nice to know there are those of you out there too.
Any advice on nutritional ways to combat some of the arthritis pains in my hands?
I feel so old, I was embarrassed to see my doctor about it, I'm only 36.
Thanks,
Alisha

-- posted by ProMommy

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» Elaine Moore - new & nervous

In response to new & nervous posted by ProMommy:
Hi Alisha,
Systemic lupus often affects young people so you're not alone here. Blood clots are caused by certain autoantibodies known as lupus anticoagulant that make your blood clot to quickly. Usually, aspirin or heparin are used to prevent these clots from causing miscarriage.
You're wise to be checking for lifestyle and nutritional changes that can help you. I've included part of a post I replied to earlier on lupus duration with information from the Life Extension Foundation (www.lef.org). This group relies on scientific research and peer-reviewed studies for its nutritional recommendations.

LEF recommends avoiding the environmental triggers that can worsen lupus. These include aromatic amines in hair dyes, alfalfa sprouts, silicone and silicone dust, hydrazines found in some mushrooms and tobacco smoke, and tartrazines used as food dye preservatives, particularly FD&C yellow.
Patients with lupus must also avoid ultraviolet light even on cloudy days.
Exercise and rest are important and so are stress reduction techniques such as meditation, yoga, biofeedback and light exercise,

Diet in lupus has been extensively studied. The general recommendation is to add essential fatty acids such as EPA and DHA in fish oil or flaxseed oil. Avoiding salt, sugar and saturated fats are important for reducing inflammation, which helps reduce symptoms of pain. Probiotics are also recommend for improving immune system health. And antioxidant vitamins and minerals are important for reducing the effects of oxidative stress. Your prenatal vitamins are important and so is a healthy diet. Best to you, Elaine

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» Elaine Moore - Adolescents with Autoimmune Disease

The latest InFocus newsletter of the Autoimmune Diseases Association has an excellent article on Adolescents and Chronic Disease, by Dr. Robert Philllips. In this article, which should be recommended reading for young patients and their parents, Dr. Phillips describes some of the problems unique to adolescents, such as denial, interactions at school, peer pressure, and relationships with siblings.

Dr. Phillips stresses that awareness of these issues doesn't make them go away but that increased awareness can pave the way to a better understanding of these problems and to methods for better alleviating some of these problems.

Importantly, Dr. Phillips writes "Don't assume that the young person has the emotional strength or the social support network to handle chronic illness-related problems successfully."

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