I wear purple.....
Sarcoidosis: the growth of tiny collections of inflammatory cells in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin. Normally, your immune system defends your body against foreign or harmful substances. In people who have sarcoidosis, the inflammation doesn't go away. Instead, some of the immune system cells cluster to form lumps called granulomas in various organs in your body.
People who suffer from Sarcoidosis have to deal with a range of symptoms:
- shortness of breath
- cough that won't go away
- bumps or patches on/under skin
- enlarged lymph glands
- fever
- weight loss
- fatigue
- red teary eyes
- blurred vision
- swollen painful joints
- nasal stuffiness
- pains in hands, feet, and other boney areas
- kidney stones
- development of missed or abnormal heart beats
- hearing loss
- seizures
- depression
- psychosis
Would you like me to go on??? Crazy right?!?! Could you imagine having to deal with a few, or possibly all of those symptoms everyday of your life?? I can't, but I know someone who does. Those symptoms are a reality and a constant reminder for them.
My sister was diagnosed with Sarcoidosis last year, after almost a year and a half of testing, hospital visits, surgeries, medications, blood tests, injections, and so much more. So much is unknown about this disease, and the worst part is there is no cure and hardly any research and funding support for this debilitating disease. My sister has had to silently suffer for far too long with a disease that 99% of people have no clue exists.
Many sufferers have a mild case, that can often go away without treatment, but this is not true in my sister's case. She has a fairly extreme case, along with a rare genetic blood clotting disorder, her symptoms can hit her hard and unexpected. She can have a great day, feel good and be active, and then the next day she pays for it, having to stay in bed and rest, barely able to move because of the pain.
I'm sharing all of this with you because the more people who know about this disease, the more awareness there is, the more the word gets out there that people are suffering.....maybe we can find a cure, so my sister doesn't have to suffer anymore, so she can live her life not in constant pain, so she can play with her nieces and nephews without paying for it the next day.
I hold this cause near and dear to me. Not only because my sister suffers from this, but because a little over 2 years ago she was hospitalized with a pulmonary embolism, and if we would have known she had this disease then, she possibly could have not had to endure 2 years of ineffective treatments, numerous hospitalizations, and tons of medications.
Spread the word and become educated, so you can help educate others. The more we learn about this disease, the more people we can potentially help!
So, in April, I'm asking you to wear purple. Support those who suffer, and their loved ones, who must deal with Sarcoidosis everyday. It's the least we can do, right??
Sarcoidosis resources:
http://my.clevelandclinic.org/disorders/sarcoidosis/hic_overview_of_sarcoidosis.aspx
http://www.nhlbi.nih.gov/health/health-topics/topics/sarc/
http://www.lung.org/lung-disease/sarcoidosis/
http://www.stopsarcoidosis.org/
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I am honored and humbled. What an amazing way to explain a disease that baffles even the most talented experts! Thank you for being my best friend and an inspiration.
ReplyDeleteI love you, Em.
Your sister,
Amanda
Amanda, Thanks for letting me share a little of your story! :) Love you!
DeleteThanks for sharing for all of us who suffer with this horrible disease with no cure.
ReplyDeleteSo sorry you have to suffer with this too! Hoping you have more good days than bad, and a cure is found soon!!
DeleteEmily, what as great tribute to your sister! My husband suffers from Sarcoid also, and you hit it on the head when you said one day they may seem fine, and the next they can't get out of bed. Praying for a cure for your sister, my husband, and all who suffer from this disease.
ReplyDeleteThank you so much!!
DeleteIt amazes me how many diseases are out there that so few know about.
ReplyDelete