It just goes away…” prejudice against people with Sarcoidosis

I had to share this article that was posted today in my Inspire.com Stop Sarcoidosis group. This article speaks to the many Sarcoidosis sufferers that deal with the misinformation that is place via the internet and medical journals. As many of you know, Sarcoidosis sufferers are like “snowflakes.” We all fall under the diagnosis of Sarcoidosis, but are different in how the disease itself affects us. Please read and help us spread awareness about this debilitating disease.
Thanking you in advance
Marilyn

It just goes away…” prejudice against people with Sarcoidosis

By kulahaw · Yesterday at 9:03 Shared with the public

If you do a general search on the internet and through PubMed government medical journal articles, the most common introduction to Sarcoidosis as a disease is… “It just goes away on its own…” This is such an obvious and blatant disregard to those that suffer from the disease. If anyone of any influence on the medical community wishes to make a profound impact upon the lives of those living with Sarcoidosis would be to advocate for the removal of this attitude, an obvious prejudice that places patients at a significant disadvantage seeking treatment, getting a medical professional to “listen to you” as you describe symptoms and complications, accessing SSDI due to a plethora of disabling ailments and complications, and just informing friends and family of why you are suffering. I have been suffering from Sarcoidosis for 10 years. Prednisone cleared the lung complications after 3 years, but left me with Neuropathy and Sarcoid of the liver, that were not resolved. I live in constant pain and can gather no sympathy or compassion from medical professionals and persons close to me due to this flippant attitude towards Sarcoidosis. Sarcoidosis is still so misunderstood and misdiagnosed.

We need more advocacy!

Cold Sweats and Night Shakes

It’s 4 a.m. and I’m up with the freaking chills. Sheet, wool blanket and two comforters later cold shakes becoming controllable. Sarcoidosis SUCKS!!! Can’t wait to see Dr. Kavuru (formerly with the Cleveland Clinic, now practicing at Jefferson Hospital in Philadelphia, Pa) on Monday. Driving to another State to get answers and prayerfully help is finally relieving the stress my family has been dealing with, because of the non help/somewhat from doctors within our State. Now back to the freaking shakes. My hands are even cold whilst I’m typing this. Lord, all I ask is for prayer. I know I’ll get through this because everyone knows, I am and always will be a warrior. I may have Sarcoidosis but it won’t have me!

Just another rant from yours truly ^_~

Marilyn’s Fight for Life Let’s KICK Sarcoidosis