Sarcoidosis is a chronic, systemic, inflammatory, granulomatous, disease of unknown origin. Sarcoidosis is found in one in fifty Black Americans. This makes it much more common than sickle cell anemia. The death rate from sarcoidosis is 10% and has claimed Reggie White, pictured above, who died at age 43. He had cardiac and pulmonary involvement. Also Bernie Mac died at age 50 from sarcoidosis.
Other Celebrities with Sarcoidosis:
Karen Duffy
Floyd Mayweather
Evander Holyfield
Bill Russell
Daisy Fuentes
Tisha Campbell-Martin
To paraprase a sarcoidosis advocate called "the gardener", sarcoidosis is "kind of like other major diseases, but without the recognition, attention, sympathy, funding, treatment, or cure."
Karen Duffy has said about living with sarcoidosis, "I have mourned for my old life and I'm trying to figure out who I am now."
I have been living with sarcoidosis for 35 years. However, my illness was misdiagnosed for years, and only recently has been clarified. How does sarcoidosis affect me on a daily basis? Well, first of all, I had to quit my job as an RN, which was very difficult. I tolerate very little activity, about 2 hours of activity, outside the home, every other day. The sarcoidosis has affected my right eye, heart, lungs, and nervous system. I have daily pain which varies in intensity and chronic fatigue.
Sarcoidosis is different for each person who has it. Some are still able to work, and then some die from the disease.
Jen Barrick was involved in a near fatal collision and had this to say about living with a disability: "I want everyone who is broken or hurting to know that God can still use you. He doesn't look down on you. He looks on you more. The weakest people have done the most for God, because in our weakness He is strong. Don't ever be ashamed of your weakness. God wants you to see the potential of,who you are going to be with His help. He wants to bring beauty from your ashes and heal your wounded heart. God wants to use you where you are, as you are. And he promises to carry you on the days you can't see ahead." Jen Barrick
I would not have chosen to live with a chronic, painful, debilitating disease. But I am trying to make the best of the situation where I find myself. I have to find my worth and value outside of a profession I can no longer participate in. I am still here and there is always hope.
Every year more patients die from medical error and misdiagnosis than from Alzheimer's, diabetes, or kidney disease. Of the top ten leading causes of death in the US, medical errors would come in right beneath accidents, which are the 5th leading cause of death.
The Top Ten Causes of Death:
1. Heart Disease
2. Cancer
3. Stroke
4. Lung Disease
5. Accidents
6. Alzheimer's
7. Diabetes
8. Pneumonia and Flu
9. Kidney Disease
10. Sepsis
Studies have shown that doctors misdiagnose fatal diseases about 20% of the time. It is essential in this era of computers and widespread medical information that patients educate themselves.
I have been misdiagnosed on several occasions. I have a background of graduating with a BSN in Nursing and working as a hospital RN, prior to bcoming ill with several autoimmune conditions which rendered me disabled and chronically ill. This is my story:
At the age of 20 I had my first bout of iritis. Iritis in an inflammatory condition of the uvea of the eye which results in pain, redness, and photophobia of the eye. It is diagnosed by an Opthalmologist looking through a slit lamp to see the inflammation. It is the 3rd leading cause of blindness in the US.
My case was misdiagnosed. I was put on narcotics for the severe pain in my eye and was not given prednisone drops for the inflammation, which is the treatment of choice. As a result of this, I lost 90% of the vision in the eye, which was later surgically repaired.
Over the years I have had 23 bouts of iritis and have put over 1,000 drops of Pred Forte, a steroid solution, into my right eye. I have also had dozens of bouts of scleritis, which is similar, but not as severe.
From the age of 21 until age 36 I was relatively healthy and graduated from college and worked as a hospital RN.
Then at the age of 36 the iritis in my right eye returned. Also at that time I developed shortness of breath, arthritic pain, tachycardia, numbness, fatigue, hair loss, and lung infections.This was misdiagnosed at the time as being indicative of lupus. There is not a specific test for lupus, it is diagnosed by meeting 4 of 12 diagnostic criteria.
As it turns out, I have 8 different autoimmune conditions, none of which is lupus. My primary condition is sarcoidosis, which is an inflammatory granulomatous systemic disease. It is similar in a way to lupus and the treatment is virtually the same.
It is common for a person to have more than one autoimmune condition. The conditions I have are, sarcoidosis, addison's disease, celiac disease, ankylosing spondylitis, iritis, scleritis, peripheral neuropathy, and raynaud's.
Iritis is often associated with other diseases such as sarcoidosis, crohn's disease, or reiter's disease. It is not commonly associated with lupus.
Once I was misdiagnosed with lupus, the doctors could not see the forest for the trees. Lupus is not a disease that can cause adrenal insufficiency, as can sarcoidosis, which is in the same family as TB, which is the largest cause of adrenal insufficiency worldwide. When I started having bouts of acute adrenal insufficiency, the diagnosis was missed, due to the original misdiagnosis of lupus.
After the acute adrenal issues presented, I was sent for a chest xray due to recurrent shortness of breath. It showed multiple calcified left hilar lymph nodes. This showed a longstanding granulomatous disease. The 4 major granulomatous diseases are TB, sarcoidosis, histoplasmosis, and coccidiomycosis or Valley Fever. I was later shown to have granulomatous calcifications in my spleen. Also I had a lump in my right parotid.
The adrenal crisis symptoms were very severe and missed by every doctor I went to. The symptoms included, very severe upper arm or back pain, moderate to severe abdominal pain, dry heaves, nausea, weakness, dizziness, and diarrhea. The symptoms were only relieved by prednisone. Some doctors felt that because I was already on 10 mg of prednisone a day that I could not be having adrenal crisis. I also had a predisposing disease called, late onset congenital adrenal hyperplasia.
I ended up after 9 years of intermittent adrenal symptoms being taken by ambulance to the ER for adrenal crisis. At the time I was screaming with pain. In the ER I was given the proper treatment by the ER staff. It consisted of 1,000 cc of Normal Saline IV plus 100 mg of SoluCortef IV. then I was given a second bolus of 100 mg of SoluCortef IV. At this time, the Endo on call, who had never examined me, nor taken a history, said to stop the steroids and treat only my symptoms. I was admitted to the hospital, taken off the steroids, and sent home. Then I was readmitted that same evening in worse crisis than before. The Endo on call again refused to treat me and I was gvien to the house Endo. I was given 850 mg of Solu Cortef IV over a 3 day period, to which I had an excellent clinical response. Then I was sent home with the wrong diagnosis and with my second ER visit totally missing from my chart.
I currently have a new Primary doctor, one that I know and trust and I was seen in the ER at the hospital where I used to work as an RN and received much improved care there. They say one of the signs of insanity is to continue doing the same thing and expecting a different response. By continuing to go to the same hospital which misdiagnosed me and then tried to cover up their mistakes I was putting my life and health in jeopardy.
I encourage anyone who feels that their medical care is not appropriate to seek out a new doctor and/or hospital and to be an advocate for their own health and well being.
