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Posted on 30. January 2012

Putting a Face on Rare Diseases

By Trudie Mitschang

At IG Living magazine, we connect daily with patients all over the world who live with chronic illness. So this is a cause that is near and dear to our hearts. Because we deal with diseases treated by immune globulin (IG), we have a community of patients for whom certain acronyms have become part of the everyday vernacular. CIDP (chronic inflammatory demyelinating polyneuropathy) PIDD (primary immune deficiency disease) and CVID (chronic variable immune deficiency) are all fodder for dinner table conversations, as are discussions about infusion speed, IG dosage and reimbursement challenges. It’s what some of our readers call the “new normal.”

Within our industry, we also deal with statistics; what makes rare diseases unique is that relatively few people in any given population are affected by them. But as I looked at some recently published numbers, I wondered if we need to redefine the word “rare.” According to the Rare Disease Advocacy Research Education (RARE) project website, one in 10 Americans is affected by some type of a rare disease -  that’s 30 million in the U.S. alone, and more than 350 million worldwide. These are staggering numbers, but as anyone who is personally living with chronic disease can tell you, a statistic is meaningless until the disease it is attached to affects you or someone you love personally.

When discussing rare diseases, whether in our magazine, on our Facebook (FB) page or in one of our weekly blogs, one of the things we strive for at IG Living is to never lose sight of the faces attached to the diseases. Our readers often tell us that they have risen above adversity by not allowing their disease to define who they are. We applaud their courage and tenacity, and celebrate their unique voices; one of our regular magazine features is our Faces of IG page where readers are regularly quoted.

Another way we can all help bring awareness to rare diseases is by participating in the upcoming World Rare Disease Day on February 29th. By blogging, posting FB links and encouraging others to do the same, it is our hope that we can begin to put faces on the 7,000-plus rare diseases impacting millions of men, women, children and families. It is only by focusing on the plight of individuals that we can generate the interest and compassion necessary to move toward finding treatments and cures for the population at large. Let’s commit to doing our part!

What to do next:

  • World Rare Disease Day is on February 29th.  IG Living will be acknowledging this important day by participating in today’s blog hop. Scroll down to the bottom of this blog and “hop” on over to another blog on the topic of rare diseases.
  • Join the “1 Million for Rare Disease ” awareness movement by displaying the 1 Million logo on your website or Facebook page. Tweet at #1Mil4RARE.
  • “Like” the Global Genes Project on Facebook: Facebook.com/GlobalGenesProject. Tweet with them @GlobalGenes.
  • Wear jeans and a denim ribbon on Rare Disease Day, and consider holding a “jeans party” to raise money for your rare disease. “Wear That You Care” - click here to see photos from last year.
  • Get involved with the Rare Project and Global Genes Project, and spread the word to your social network.
  • Tell friends and family about this awareness campaign by forwarding this blog, re-posting on Facebook, etc. Please pass it on!
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Categories: Life With IG

Comments (4) -

Mary Pruitt
10:03 AM on Wednesday, February 22, 2012

Thank you for supporting Rare Disease Day!  My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. Rare Disease Day means so much to the millions of people and families affected by the approximately 7,000 rare diseases. Thanks again! Mary Pruitt http://www.lalsolace.org

susan watkins
8:00 AM on Saturday, February 25, 2012

Mary, I am so profoundly sorry for the loss of your son. It's true that this is something most of us face, but it is never easy when it comes to the door.

Rare Disease Day is a great aware raisin event.  So many stories and so much helpful information.  Yes, we and our diseases are rare, but aren't there so many people around to help and support.  

Thank you everyone including patients themselves.  Love is coming your way.

Mitzi McDermott
2:46 PM on Friday, July 13, 2012

I am interested in finding out if someone besides me has the experience
of RLS for about 24 hrs about the time I have my IVIG every 21 days.  I
\have taken Requip (  makes me sick to my stomach)  I was dx about 3 yrs ago    (I was slow to acknowledge I had a problem!!!)   I am now 78 yrs old.

I.G.Living
8:53 AM on Monday, July 16, 2012

Hi Mitzi.
I have not heard of RLS (Restless Leg Syndrome) being a common occurance during IG transfusions, but can imagine this is an uncomfortable condition. I think you should contact the manufacturer of your IG and explain what is happening;  they can report to the FDA via adverse event reporting.  Are you only having RLS symptoms for the 24 hours after your infusion? i'm sorry to hear the Requip makes you ill. Some patients have found these suggestions to ease their symptoms: cut back on caffeine and alcohol, take an over the counter pain reliever (like Advil, Motrin, ect), massage your legs while soaking in a warm bath. Best wishes moving forward.

Annaben Kazemi
Patient Advocate, IG Living Magazine

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