Sarcoidosis is often referred to as a medical mystery because its cause is unknown and there is no known cure or preventative strategy. It's a potentially fatal inflammatory disease that can appear in almost any organ in the body. Although the lungs are affected in more than 90 percent of patients, the disease often attacks the heart, eyes, central nervous system, liver and kidneys, according to the Foundation for Sarcoidosis Research.
"The main way [to prevent it] is to follow up carefully with your doctor and to select one that has experience and interest in sarcoidosis, especially if the disease is complicated, severe, or prolonged," says Dr. Dan Culver, a staff physician at the Respiratory Institute and a member of the Department of Pathobiology at the renowned Cleveland Clinic. Culver has made significant research contributions in the study of sarcoidosis.
Although sarcoidosis affects men and women of all races, data suggests black women are most frequently and most severely affected, reports the Foundation for Sarcoidosis Research. Even with this understanding, few epidemiologic studies have focused on black women.
Tondalah Day Stroud, a 37-year-old married mother of one who has been living with sarcoidosis since 2000, shares her story.
(As told to Aisha I. Jefferson)
Imagine being 'skin and bones' your whole life, only to develop a mysterious illness that causes you to gain 70 pounds in a few months. Oh, and did I mention that this 'unknown disease' created lesions on my legs? Pretty sexy for a model, huh?
That's what happened to me 10 years ago when I was diagnosed with the autoimmune disease sarcoidosis.
I was 27 years old and working as a model for SoftSheen-Carson and other hair and fashion companies. I had just given birth to my son in November 2000 when I started developing very unusual symptoms. The morning following his birth, my lymph glands were so swollen that my face looked disfigured. To me, I looked like the elephant man. It was very traumatic and I remember looking in the mirror, thinking, 'a baby does all of this to you?' My doctor also associated my condition with my pregnancy and said it would go away over time.
Well, it didn't go away, and over a span of a few weeks, my condition steadily worsened. I started to gain weight rapidly, my lung capacity became severely threatened, my other internal organs were attacked, my legs became so raw and scaly that it hurt too much for me to even touch them, and I was going blind.
These symptoms kept me visiting various doctors for three weeks straight. One doctor attributed my deteriorating eyesight to lupus. Another said it was the mumps and yet other diagnoses labeled it tuberculosis and even a form of cancer. The truth is that they really didn't know what was happening to me, and I was very scared. I remember sitting in the hospital with my mother, crying because I had just had a baby and they didn't know what was wrong with me. I was single at the time and feared not being around to take care of my son.
Part of the reason for the misdiagnoses is that sarcoidosis can attack any organ, doctors don't know what causes it, and there isn't a known cure. It wasn't until the results returned from a biopsy of my leg that I was officially diagnosed with Heerfordt's Syndrome sarcoidosis. I was put on the corticosteroid prednisone, which lessened the swelling in my face but caused me to gain weight at lightning speed.
At 5'8, I weighed 118 pounds when I had my son and my pre-pregnancy weight averaged around 103 pounds. By Christmas, I was wearing a size 8. I had never been that size and I was so excited because I finally had a 'butt.' Unfortunately, I didn't understand that if I kept eating like I was, I would get much bigger. Four months later, I wore a size 18 and couldn't believe the amount of weight I gained. For people just meeting me, I looked like a thick girl. For those who'd known me previously, they were like, 'man, you're fat.' When I went to renew my driver's license that summer, I weighed 179 pounds and wore a size 20.
I have been an independent spirit my whole life, and now I needed my family and friends' help with basic things like driving, bathing myself or even caring for my newborn son. My fatigue got so bad that I had to resign from my job.
The drugs that counter these symptoms are very harsh and can spark other illnesses. In addition to excessive weight gain, prednisone caused severe bone deterioration, rheumatoid arthritis, severe mood swings and depression. Methotrexate, which is a mild chemotherapy drug that I also take, makes me extremely tired for the first 3 days I take it.
As horrific as this experience has been, I decide not to be a victim. So I took things into my own hands by educating myself about sarcoidosis online and joining support groups. I even shared my new discoveries with my doctors and we put that knowledge into action.
I changed my diet, eliminating carbohydrates and sugary foods and replaced them with more vegetables and fruits. Although I may treat myself to a nice steak on special occasions, I pretty much removed red meat from my diet and stopped cooking it in my home altogether.
I am telling you, when I shifted my diet, the weight started to come off and I was able to get my diabetes under control. To date, I've lost 45 pounds and now weigh 134 pounds. But since starting prednisone last week, I'll probably gain about 15 pounds over the next six to eight weeks.
I'm doing a lot better now, but there were several days when I really wanted to call it quits. I cried when Bernie Mac couldn't recover from pneumonia and died because I used to get pneumonia every April for four years straight. The reality is that even a simple cold could wipe someone out if they have sarcoidosis in the lungs. But I couldn't let that be my focus.
When I find myself getting distracted in that way, I turn my attention to my faith and the wonderful things that are continuously unfolding in my life. Yes, through my experience with this life-threatening disease, I've developed a closer relationship with God and a deep understanding of faith and gratitude that didn't previously exist. I've learned to trust that I can still have an enjoyable life and not allow sarcoidosis to dictate my world.
To learn more about sarcoidosis, visit the Foundation for Sarcoidosis Research's website, www.stopsarcoidosis.org, or The Bernie Mac Foundation at www.berniemacfoundation.org.