
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.

Comments: (24)
Add a comment
By: karla mcclain on 2/17/2011 3:46PM
Tondalah,
Thank you for sharing your experience with Sarcoidosis. My niece was diagnosed with the disease one year ago and she has gone through a very similar experience. Prior to this, I had no knowledge of this disease but sometimes it is difficult to diagnose.
I am glad you have been able to change your diet, lose weight, stay in good spirits and in touch with God.
Best wishes to you and family.
Reply to this Comment | Report This
By: Toya | The Limerick Lane on 2/17/2011 3:52PM
My aunt suffers from this disease. And according to her doctors the worse case ever seen in Michigan. She has already had one lung transplant. This disease is very prevalent in African-American Women. But I believe it's more common than we are led to believe. After talking about it, I find that more people have this disease. Unfortunately there are only meds to combat the side effects of Sarcoidosis. And then you have to take more meds to combat the side effects from those meds. It turns into a vicious cycle. I hope more stories like this will lead to some sort of cure.
Reply to this Comment | Report This
By: Neville Barrett on 2/25/2011 3:15PM
You do have options. Doctors are good and are need to help us with our health. But there are times that we should return to the natural things of God. Prayer and raw fruits and vegitables with phytonutrients are your best hope. See Genis 1:29 and go to;http://sweetsuccess.124online.com/ and
check out the product. God bless.
Report This
By: Justifyed on 2/17/2011 11:23PM
Prayers to this young lady, and others who are suffering from this disease. Until Bernie Mac disclosed his illness, I had never heard of it before.
I hope this gets out into the community more, and we become more educated about it. KNOWLEDGE IS POWER!
Reply to this Comment | Report This
By: gichaya on 2/21/2011 11:50PM
When are we going to stop accepting that bullsh*t that blacks are affected by dayum near every disease on the market? There is no way blacks would still exist if we had all the diseases that they claim we have. This is just another way of attempting to make us feel inferior. Well it's not working because we are still here and still the chosen ones.
Reply to this Comment | Report This
By: JsIsaac58 on 2/21/2011 11:50PM
There is nothing about Sarcoidosis that some Dr. or society is using to futher hender the black population. Sarcoidosis is very real, it memics other illnesses. Which is why they treated me for Asthma instead, it took them three years to finally dianoise my condition. It's a very hard road, I stuggle to breath doing the very simple of thing. Climbing a flight of stairs for me is a nite mare. I was in perfect health when I contacted it. Oh and by the way it runs in families, I have four other relatives that also suffer from the disease.
Report This
By: Gichaya on 2/22/2011 10:03AM
@ JsIsaac58...I am sorry that you have to live witht his dreadful disease. I am well aware of the disease because one of my first cousins has it. I wasn't saying that this disease didn't affect blacks because I know it does. I'm just sick and tired of them painting us as the number one carriers of dayum near every disease in existence. I don't know if it runs in families because I have a very large family and only one person so far has the disease. That one person is one of 59 first cousins and siblings and everyone is over the age of 33.
Report This
By: jsisaac58 on 2/21/2011 7:18PM
I too have Sarcoidosis,I've had it now for 21 yrs. I am a senior and the previous article could have been written almost word for word, with the exception that I was able to improve my immune system with suppliments and herbs. I was taking Pdnisone and methotexate and both was causing horrible side effects. I am now on oxygen, and I refuse to take those medications. I've done a lot of research and was in two studies, one at John Hopkins and one at Georgetown unniversity hospital under Dr. Henry Yeager, who was a God sent. All, I can do is take things one day at a time.
Reply to this Comment | Report This
By: Neville Barrett on 2/25/2011 3:20PM
I thank God that I do not have any disease, but one of younger sisters recently died fom lupus and
my youngest son has suffered with crohns for more
than twenty years.So I have done a lot of research over the years on inflamitory diseases and found
that phitonutrients from plants are the best hope for such sufferers. Nutrionist such as Gary Null have developed protocols that does help. There is also a new product product called NatraBurst that has done wonders for some people.You can learn more about this natural food at: http://sweetsuccess.124online.com/ .
Report This
By: hhsan on 2/21/2011 9:46PM
My thoughts on Sarcoidosis is that it is a bi-product of a overactive immune system that is trying to fight off a dormant viral infection that hasn't been detected, such as chicken pots, mumps, herpes, HIV,etc. Some people never show signs of being exposed to certain deceases, but their immune systems know these dormant virus are present, and try to attack them, destroying go cells in the process. I have done a little research on this issue, and hope someone else would take this data into consideration in their research.
Thank you,
Reply to this Comment | Report This