Today is Rare Disease Awareness Day and since I have a rare disease called Cryoglobulinemia, I have a special interest in February 29th, 2016. It’s true that my particular autoimmune disease is very rare but when I place it within the greater context of the many rare autoimmune diseases, I see myself as one among many suffering from a poorly understood disease. It is estimated that 23,000,000 people in the U.S. have an autoimmune disorder; diseases that bear the common characteristic of the body attacking itself. Within my family, friends, and personal acquaintances, I know and love others who suffer from: Multiple Sclerosis, Sjogrens, Scleroderma, Interstitial Cystitis, Rheumatoid Arthritis, Polymyalgia Rheumatica, Excema, and one friend who I suspect has an autoimmune disorder that has remained undiagnosed for years. In fact, I know more people who suffer from mild to crippling autoimmune diseases than any other disease. If I add autoimmune disease to other rare diseases it soon becomes clear that Rare Disease Awareness Day is about everyone. No one is immune to falling victim to a rare disease and facing the accompanying vacuum of knowledge with subsequent, lack of effective treatment.
On this special day set aside to think about people who suffer from rare diseases, my hope is for those of us who live under the chronic weight of diseases with strange sounding names to be viewed as less uncommon. I hope we will be seen in our true light as part of the greater whole and that which inflicts us now could at any time, inflict you or someone you love tomorrow. Awareness is the beginning in the fight to end the ignorance surrounding rare diseases that will lead to research, treatment, and cures.
Knowing that you have taken the time to read this article gives this Cryoglobulinemic woman new hope. Thank you for taking the time to consider the meaning behind Rare Disease Awareness Day 2016.
joyindestructible 
I had absolutely no idea about your struggle. In all honesty, I have never heard of it and it can’t be easy having a rare ailment that probably makes medical assistance a challenge. Wow ! Pam you are super. To remain upbeat and do what you do in the face of such adversity is awesome. The Lord is indeed your strength.
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Thank you, sweetheart. He truly is my strength, my hope, my joy, my peace and I know He will help me put my cryo back into remission. He will heal me now or in the better world to come but cryoglobulinemia won’t win!
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I know this Rare Diseases exist. I once met a man who had Klebsiela Pneumonia. He was looking healthy and I couldn’t get a head or tail of this disease. He is a very neat person, who pays careful attention to what he eats and drinks.
What more can I say? Thanks for sharing this! We all need to know these things and support those who are going through them.
God bless you!
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Thank you. There’s no better medicine than compassion and a willingness to understand. God bless and keep you always.
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Thanks Pam. I didn’t even know there was a rare disease day. My little aches and hurts are nothing compared to what you go through daily. I thank God for you and your joy through it all.
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I never heard of it before either. February 29th is a rare day so, that is why this date was chosen. We all have our burdens to bear, Rob and they are all made lighter by understanding and compassion. Jesus is my joy…and yours.:0)
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You would never know by your positive attitude that you are suffering from this disease. May God continue to live in your heart and keep you tightly tucked within His wings. With God all things are possible – even healing. Love and hugs coming your way!
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Thank you, Kathy. God knows when my positive attitude fails and He is good to hold me there until I recover my senses. In Him lies all of my hope.
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Indeed! Good advice for all of us. I will keep you in my prayers!
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Thank you!:0)
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Thank you for writing this post, didn’t know today is the rare disease day and never heard of Cryoglobulinemia until you first revealed it on your blog. I just prayed for God to sustain you and also for the research for a cure for this and other autoimmune disease
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Thank you, Jim. I know your prayers do sustain me. I pray for you and yours as well.
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Keeping you in my prayers
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Thank you, Julie. I’m seeing my doc on Thursday to talk about a treatment that has the potential to put it in remission and not leave me financially destitute. I need lots of prayers on that day.
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