photo credit: TheGiantVermin
Support Group Being Launched in Northern Virginia for Rheumatoid Arthritis, other Autoimmune Diseases
by Robin Shirley, The Truth About Juvenile Rheumatoid Arthritis Blog
Rheumatoid Arthritis, Multiple Sclerosis, Crohn’s Disease, Diabetes…what these
diseases all have in common is that they are autoimmune diseases.
Today, according to the American Autoimmune Related Diseases Association,
approximately 50 million, or 20 percent, of Americans suffer from
autoimmunity. So, how many of you reading this have an
autoimmune disease? Or a “my immune system has no idea what the
heck it’s doing disease,” which is what I like to call it sometimes, except
that I don’t use the word heck… I bet a few of you reading this have been
diagnosed with one, and if you haven’t, you probably know someone
who has one.
The truth is that these diseases are often pushed out of the media’s
and the public’s attention because they don’t pose enough of an
immediate threat to the life. Not enough people die from
autoimmunity to make it a bigger issue than cancer. As a result, a lot
of people are out there, in constant pain, depression, and
frustration, without any support. I say this has to end!
I was diagnosed with Juvenile Rheumatoid Arthritis when I was eleven,
and I’ve been on my own since then to navigate the emotional side
effects. My parents and siblings have always been there to be on the
receiving end of nasty emotional outbursts, whether it be a few hours
of tears, or a short temper, or a bout of bitchiness (my specialty),
but how much can they take? And, how much of what I have to dish out
can they really understand and help me cope with? What I really
needed, along with a good punching bag, was a friend who was going
through it too. No one can understand the emotional repercussions of the
never-ending pain that these diseases cause.
Because I don’t believe that anyone should have to go through it
alone, I’m starting up a support group. The official name of the group
is The Great Falls Rheumatoid Arthritis Support Group. The name
derives from my own diagnosis, but it is a group for anyone dealing
with a life-altering and physically or emotionally disabling
autoimmune disease. Friends and family of those dealing with
it are welcome.
For the first meeting, I am inviting members to my home on September
12, 2009 at 1pm. Come hungry because I will be making some nutritious
snacks for us to enjoy while we sit around in comfy chairs and talk
about our experiences and what we’ve done to try to ease our troubles.
I will personally have a few laughs and advice that I’ve gleaned from
friends with RA, and a local nutritionist will be there to talk a
little bit about changes you can make in your diet to reduce
inflammation and pain. We will also talk about what we want this group
to be.
You can find more information about the group at
http://rasupport.wordpress.com and you can sign up for the group and
view the calendar of events at www.meetup.com/gfarthritis.
If you or anyone you know needs support, please refer them to these
sites, it may make their world a little less unbearable.
My email address is arthritis.survivor@gmail.com and I offer it for anyone to
vent, ask questions, and find support. You can also visit my personal
blog at http://thetruthaboutjra.blogspot.com for more information on
me and JRA!
with hope and healing vibrations, Robin
Thank you Robin! Robin is kicking off today’s blog carnival on Natural Cures for Autoimmune Diseases. If you have ideas to submit, send them to me by email, or comment on this blog post. Please forward the link to this article to others, through twitter, facebook, email, let’s find out what is helping people cope, and even overcome autoimmune disorders! What is a blog carnival? See our Natural Cures page for more details.
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5 Comments
My husband has RA and developed Chronic Fatigue (CFIDS) Syndrome in the 1990s before it was widely accepted as a genuine disorder. Another reason I believe autoimmune issues are so thoroughly ignored is that they are hard to test for (and therefore “prove” by medical standards) and because the symptoms are often subjective. I can’t begin to explain the frustration we went through as my husband’s symptoms of CFIDS were explained away as laziness.
If it were not for a solitary “hero” doctor (subsequently pushed out of business by the HMO system) who not only believed us but went to great lengths to research the syndrome, its causes and reports of helpful protocols, it is unlikely our marriage would have lasted.
Local Nourishment´s last blog ..August 2009 Summary
What a informitive post. enjoyed the read. I myself have five forms of arthritis and one of the worse is rheumatoid arthritis.
My autoiummine disease is vitiligo. I started with a white patch on my hand four years ago at 36 yo just a few months after my first son was born. It’s gotten worse and worse. I cut out wheat and started eating according to Nourishing Traditons. I’ll wait several months to see if there is any improvement.
I feel much better and have more energy than I ever remember having in my forty years so I’m hopeful that my skin will stop turing pale white. We’ll see…
local nourishment- i just read your blog for the first time and it sounds like your family has been through a lot! I agree about why autoimmunity is overlooked. It is so hard to explain the fatigue to someone who doesn’t have it, and the aches and the horrible pain.
melinda-i just found your blog! it’s great because i love to cook but have trouble b/c my hands are worthless these days.
-robin
I hope the diet helps with your condition. I also feel more energy when I eat that way.
robin´s last blog ..Rheumatoid Arthritis Support Group
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