Category Archives: Auto Immune Disease – Living Strong

February 2 Rheumatoid Awareness Day

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Patients Increase Public Awareness of Underestimated Disease

Rheumatoid Arthritis Awareness Day - February 2

Rheumatoid Awareness Day

January 22, 2013 – Rheumatoid Patient Foundation (RPF) announces the establishment of Rheumatoid Awareness Day to be held each year on February 2, giving people with the chronic illness known as rheumatoid arthritis, or rheumatoid disease, a day of recognition. Because the disease is commonly presumed to be a type of arthritis, awareness is lacking, causing problems with disability accommodations, clinical care, healthcare reimbursement and research funding.

February 2 already boasts the observance of Groundhog Day, from which several analogies can be drawn to rheumatoid disease. “Compare disease onset to the moment the groundhog comes out of his hole to look for his shadow,” says Kelly Young, founder of the RPF. “It’s impossible to predict how aggressive the disease will be or whether treatments will be effective. The six weeks that the groundhog forecasts correspond to the short window of opportunity for people with rheumatoid disease to get early diagnosis and treatment, which has been shown to be a crucial component of positive outcome.”

Rheumatoid arthritis is a progressive inflammatory disease causing damage to joint and organ tissues, resulting in severe pain, frequent disability, and increased mortality. For most patients, current treatments neither relieve all symptoms nor assure a healthy future. Remission is rare[1]. Rheumatoid disease affects about one percent of the world’s population, with 1.6 to 2 million Americans currently diagnosed. Mayo Clinic says lifetime risk of the disease is 3.6 percent for women and 1.7 percent for men[2].

Rheumatoid Awareness Day comes at the start of Heart Disease Awareness month, underscoring a serious aspect of rheumatoid disease: heart involvement. Studies show that rheumatoid disease may affect the heart prior to diagnosis[3]. Rheumatoid patients have higher incidence of stroke and atrial fibrillation[4] in addition to the specific effects of the disease upon the heart itself[5]. A study conducted by Mayo Clinic[6] reported that rheumatoid arthritis patients were twice as likely to experience silent heart attacks and sudden cardiac deaths.

The Rheumatoid Patient Foundation will support the first annual Rheumatoid Awareness Day with a campaign aimed at raising awareness and educating about rheumatoid disease. RPF encourages both the rheumatoid patient community and the public to get involved by sharing educational resources, promoting awareness messages via social media, participating in a live online chat and a matching donation opportunity. For information on how to support Rheumatoid Awareness Day, visit http://rheum4us.org/rheumatoid-arthritis-awareness-day/.

Rheumatoid Patient Foundation

RPF is a 501c(3) non-profit organization dedicated to improving the lives of people with rheumatoid diseases such as rheumatoid arthritis and juvenile arthritis. RPF was founded in 2011 to address significant lack of disease education, comparatively low levels of research funding, and difficulty obtaining adequate treatment. RPF is committed to creating pathways to better clinical care and disease outcomes through education, awareness, and participation in patient-centered research. For more information, visit http://rheum4us.org or follow us on Facebook http://www.facebook.com/rheumatoidpatientfoundation or Twitterhttp://www.twitter.com/RheumPF.

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Contact:

Kelly Young
Kelly@rheum4us.org
PO Box 236251
Cocoa, FL 32923


[1] Prince, F et al. Arthritis Research and Therapy. Sustained rheumatoid arthritis remission is uncommon in clinical practice. http://arthritis-research.com/content/pdf/ar3785.pdf

[2] Mayo Clinic. 2011. Mayo Clinic Determines Lifetime Risk of Adult Rheumatoid Arthritis. http://www.mayoclinic.org/news2011-rst/6137.html?rss-feedid=1

[3] Kerola, A et al. Annals of Rheumatic Diseases. 2012. Cardiovascular comorbidities antedating the diagnosis of rheumatoid arthritis. http://ard.bmj.com/content/early/2012/11/22/annrheumdis-2012-202398.abstract

[4] Jesper, L et al. British Medical Journal. Risk of atrial fibrillation and stroke in rheumatoid arthritis: Danish nationwide cohort study. http://www.bmj.com/content/344/bmj.e1257

[5] Young, K. 2011. Rheumatoid Arthritis Warrior. 20 Facts About Rheumatoid Heart Disease. http://rawarrior.com/20-facts-about-rheumatoid-heart-disease/

[6] Science Daily. 2005. Mayo Clinic Finds Rheumatoid Arthritis Patients At Higher Risk For Unrecognized Heart Disease And Cardiac Sudden Death. http://www.sciencedaily.com/releases/2005/02/050204121639.htm

At the end of the day… just look up and be thankful

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View from my kitchen Window… so blessed with amazing sunsets!

Living with an Auto Immune Disease is difficult.  Some days harder then others.  I pride myself on waking up each day and just thanking my Father for all the precious gifts in my life.  I have an amazing family and a few very dear friends.  That is all it takes to get me through.  As long as they understand me and continue to love me for who I am, what more does one need?  It’s been difficult though, even for my family to understand my life with RA.  I have seen friends come, and watched them go, partly I think because I can’t keep up with them and their active lifestyles, or that they don’t know about my disease (they think they do) and they don’t want to take time to learn about it and what it really does to my day to day life.

I have found that a key part to my emotional health when dealing with this chronic illness is getting support from others.  While it is very difficult to talk about, it’s necessary!  You deserve the support that you give your friends and family too!

When communicating about your disorder with friends and family, being honest is the best way to go!  Opening up about your condition will give them the opportunity to understand you better.  Start by giving them the facts.  Just hearing that you have a chronic, serious condition can be difficult for your family and friends.  They may not want to believe that you are sick.  And their denial can feel like they just don’t care to you… which normally is so far from the truth.  Focus on educating your family and friends (your support group) on your illness and point them to resources, such as Web sites or organizations focused on your specific condition.  Often you will get a variety of emotions back, denial, anger, frustration and sadness, especially when it comes to hearing about challenges in your everyday life and it’s uncertainties that lie ahead for you.  But with time, and communication they will accept it and be more understanding of it.  And for those “friends or family” members that don’t take the time to learn or understand and think they have you all figured out as being lazy and a whiner… let it go.  Remember, love is unconditional.  : )

By being open with your support group, it’ll be easier for you to ask for help when you need it.  But remember to choose your words wisely when asking for help.  Tell them that you are feeling weak on this particular day and could really use some help, instead of accusing them that they always expect things from you without taking into consideration that you are not well.  If you have the right support group, they will understand when you are feeling physically or emotionally vulnerable.  And it makes it so much easier and you have less guilt at the end of the day, because you have been open and honest with the people that love you the most and understand you.

So many people I know that suffer from “invisible illnesses” choose not to talk about it with their friends and families, and I feel that they suffer that much more… and alone!  You don’t deserve to go through this alone.  Nobody does.  The only difference with Auto Immune Disease and Cancer, there are no cures for Auto Immune Diseases.  People with cancer don’t hide.  They get support, and that support often times pulls them through, and if by some chance it does not pull them through… well they have passed away with the love and support from those who love them.

I choose to talk about my disease, and I choose to support others with Chronic Illness, and encourage them to share.   You never know who you may help along the way.  Now you can choose to love me… or leave me!  Your choice…. I got all I need at the end of each day.

Two sides to my mirror…

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What do you see when you look into the mirror?    I see someone I admire, I see a woman of faith, I see a loving mother and wife, I see a daughter and a sister, a friend, and I see Disease.  You might see a lot of the above, but you don’t see my disease.  As I turn away from the mirror I put on my cape and I am ready for the days challenge.  My typical day starts with sending my husband out the door to work where he  puts on his badge, gun and bullet proof vest… that’s never an easy goodbye.  He does not know that… that is challenge one.  Hiding the fact that the goodbye kiss could really be “goodbye”.   As I hear him drive off I start my daily prayers for his safety, his happiness and his faith in God to get him through this day.  I then turn my thoughts to the kids.  Making sure everyone is up and ready to start their days.  That is challenge number two… While mornings are the most difficult for me because I have Rheumatoid Auto Immune Disease.  Challenge number three comes with the daily chores, sometimes they come easy to me and sometimes they don’t come at all.  Challenge four is my biggest challenge of all and that is facing the mirror again at the end of the day when my cape comes off.  I find it hard to admire the woman I am looking at, I find it hard to see the faith in her eyes because she looks so tired and is in such pain, I find it hard to give to the husband and to the kids because I’m so tired from giving them a warm, clean home to come home to at the end of their day and providing them with a warm meal in their tummies.  I often feel like I have failed as a friend because I could not keep a lunch date, or talk to a friend on the phone because I hurt so bad.  I have Rheumatoid Auto Immune Disease… you can’t see it, but I can.   There are two sides to my mirror.

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Upon reading my Facebook this morning I stumbled across this lovely reminder that we are not alone in our fight against whatever Auto Immune Disease we are dealing with.  I hope you find strength in knowing that you can reach out and share with others who feel alone in there fight as well.  One thing I have done that helps me, is I search for positive quotes (you will find those in my Family, Faith and Inspiration category.  I post them on post it’s and place them in places where I will see them throughout the day.  It encourages me to stay strong on the days I feel the weakest.

“One thing that you must always remember is that you are not alone in this fight. There are hundreds of thousands of people all over the world fighting with you. I am fighting with you. In the moments where everything feels the toughest, I want you to dig down deep, find the strength you need to fight this disease, and create for yourself a life that is filled with health, success, happiness, and love.””

http://www.facebook.com/MSLivingSymptomFree