Sarcoidosis can be devastating and difficult to diagnose, yet it disproportionately African-Americans. It’s the disorder that led to comedian Bernie Mac’s untimely death 9 years ago, though women get it more than men. Dr. Jen Caudle provides more information on this condition.
WHAT EXACTLY IS SARCOIDOSIS?
Sarcoidosis is a condition that causes inflammation in the body- it causes the immune system to over-react. This often occurs in the lungs, skin or lymph nodes- but it can affect any organ in the body. With sarcoidosis, you have something called “granulomas” – which are lumps of immune system cells that cluster in different organs of the body. These granulomas can affect how organs work and contribute to symptoms that people get.
We don’t really know what causes it- BUT researchers do think that genetics and the environment may play a role.
WHAT ARE SOME OF THE MOST COMMON SYMPTOMS OF SARCOIDOSIS?
Many people will have no symptoms at all. The symptoms of sarcoidosis vary depending on which organs are affected and can also depending on your gender, age, and ethnic background.
Those who have symptoms commonly have the following: cough, shortness of breath, wheezing, “flu-like” symptoms, fatigue, night sweats, weight loss.
But patients can also have skin rashes and bumps, painful lymph nodes, eye symptoms and even joint pains.
HOW IS IT TREATED AND IS THERE A CURE ON THE HORIZON?
Not everyone with sarcoidosis will need treatment. Sometimes the condition improves without treatment.
The need for treatment depends on the symptoms, which organs are affected and how they are affected, etc.
There is no cure but the condition can be treated and managed. It is important to mention that this is a serious condition and some people have severe complications, but many live happy and productive lives with this condition.
Diagnosing sarcoidosis usually requires lung evaluations which can include chest X-rays and other testing; biopsies are also done.
The treatment depends on which organs are affected and how. But steroids are very common treatments used. There are other medications used as well (affect immune system, etc).
It’s also important to see the doctor regularly, eat a healthy diet, exercise, not smoke, etc.
In addition, research is ongoing – we certainly need research to help us develop more treatments and understand sarcoidosis better.
DOES IT DISPROPORTIONATELY AFFECT BLACK PEOPLE?
It mostly affects people ages 20-50 and more women are affected than men. African-Americans are commonly affected as well as people of Northern European origin
In the US, the disease affects African-Americans more often and more severely than Whites.
People with a family history are at higher risk.
WHY IS IT TRICKY TO DIAGNOSE?
The symptoms of sarcoidosis often overlap with the symptoms of other diseases so sometimes it can be tricky to diagnose at first. Sometimes people think their symptoms are related to the flu or another condition and may disregard their symptoms.
ARE THE SYMPTOMS DIFFERENT FOR MEN THAN THEY ARE FOR WOMEN?
ARE ANY OTHER DISEASES CONNECTED TO SARCOIDOSIS?
It is possible for sarcoid to co-occur with autoimmune and connective tissue diseases.
Dr. Caudle answers your ‘Text Tom’ questions below:
I had Sarcoidosis back in the 80’s when I was in my 30’s, was treated with steroids and had a biopsy after that I was fine, I am now in my late sixties. Are you saying that I still have I and that it could flare up again?
A: Sarcoidosis is a chronic condition. There are many people with the condition that go into remission, but there are some who have flare-ups. The clinical course is different for each person.
Does this condition affect people with asthma?
Sarcoidosis can affect anyone, but African-Americans and people of Northern European descent are at higher risk. Sarcoidosis often affects the lungs but can affect other organs as well.
How does sarcoidosis even come about within one’s system?
Researchers are unsure of the exact cause but it is felt that genetics and the environment plays a role.
I’ve often wondered if I have it. I get diagnosed by family doctor almost annually with having an upper respiratory infection or bronchitis. That just seems weird to me. Nothing is ever detected through a pulmonary function exam (through work). Should I be asking for a specific test?
The most important thing is to talk with your doctor about your symptoms and express any concerns you have about your symptoms. You and your doctor should have an open dialogue about what testing and treatments might, or might not, be appropriate for you.
I’ve had a cousin to pass away due to sarcoidosis. Her cousin on her mother’s side passed away with the same thing. Now her sister has it…is it hereditary?
The exact cause of sarcoidosis is unknown- but genetics and/or environmental exposures may play a role.
My daughter had cold for three weeks. Should she get test since her father has sarcoidosis?
A: Not necessarily. The most important thing is for your daughter to see a doctor and make sure her symptoms resolve appropriately. Her doctor should also be made aware of her family history. Make sure she discusses any questions about her father’s history and her own- the doctor should discuss this with her. Open dialogue is key.
I live in the Pensacola panhandle area of Fl. I am a sarcoid patient but have a problem finding qualified caretakers in this area. My case is not severe right now, but I am required to take an annual heart MRI. Can you recommend adequate patient care in this area?
Can you have symptoms without having flu or cold such as shortness of breath?
It is possible to have symptoms other than shortness of breath, cough or wheeze with sarcoidosis. Some people have fatigue, night sweats, skin rash, joint pains and eye symptoms, among others. And some have no symptoms at all.
Good morning, I am a sarcoidosis patient. I would like to know if sarcoidosis causes hair loss?
It is possible.
Can sarcoidosis affect the spine? How?
Sarcoidosis can affect any organ in the body. It can also affect the joints.
I was diagnosed with sarcoidosis in ’96. Are there any support groups for people with this condition?
I would definitely ask your doctor about this- a support group is a great idea to help support those with the condition.
What do you suggest for someone who is in pain almost continually, has been tested via blood work, X-rays, endoscopy, MRI and reportedly nothing is showing to be the cause. Very frustrating?
Be persistent and listen to your body. If you feel something is wrong – continue seeking care from health care professionals and express your concerns. This is important.
What are the most common treatments for sarcoidosis with the least severe side effects?
There are many medications used to treat sarcoid- from steroids to others. What’s most important is to find the medication that best treats the type of sarcoid that you have, with the most tolerable side effects. Definitely work with your doctor on this!
Can this develop in conduction with another autoimmune disease like Crohn’s?
A: Sarcoidosis can co-exist with many other conditions- including autoimmune conditions and connective tissue diseases, as well as others.
DR. JEN CAUDLE IS A BOARD-CERTIFIED FAMILY PHYSICIAN AND ASSOCIATE PROFESSOR AT ROWAN UNIVERSITY. SHE FREQUENTLY APPEARS AS A HEALTH EXPERT ON THE DR. OZ SHOW, CBS 3 PHILADELPHIA NEWS, FOX NEWS, CNN, HLN AND OTHERS.
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