Sarcoidosis is an inflammatory disease that can affect almost any organ in the body, but most commonly targets the lungs and lymph nodes. Due to the high unmet medical need, there is an urgency for effective and accessible treatment options. We sat down with Dr. Peter Sporn at Northwestern Medical Center to learn more. We also met Cheryl who spent nearly 2 decades searching for a team of doctors who would help manage and treat her sarcoidosis. She found a strong support system in The Foundation for Sarcoidosis Research where she met a community of individuals who understood her journey, while also providing support and guidance to other patients newly diagnosed.
It’s an inflammatory disease that can affect almost any organ in the body but most commonly targets the lungs and the lymph nodes due to the high unmet medical need there’s an urgency for effective and accessible treatment options we’ll sit down with dr peter sporn at northwestern medical center to learn more but first we’ll meet cheryl who’s been living with this
Disease for 20 years we’re going behind the mystery of sarcoidosis i’m retired from the new york city department of education i love working out and i love gatherings with family and friends i started having chest pains when i breathed and when i coughed i couldn’t even do 100 at my job because i was so fatigued and tired so it was a sunday morning i was getting
Ready for church with my family and i started feeling worse so i went to the emergency and they did a chest x-ray and also they took a biopsy and that’s when they found out i had a rare disease called sarcoidosis i didn’t know is my life over where i’d be able to live a normal life i didn’t get any explanation dr peter sporn is the director of the northwestern
Sarcoidosis center of excellence sarcoidosis is an inflammatory condition in which the immune system becomes abnormally activated causing granulomas or nodules to develop and ultimately that can lead to scar formation in the lungs and other parts of the body the skin and the eyes the heart and the nervous system including the brain and the spinal cord can become
Involved when sarcoidosis affects the lungs we refer to it as pulmonary sarcoidosis pulmonary sarcoidosis is often associated with symptoms such as shortness of breath cough and with wheezing the disease can progress and some patients can go on to require treatment with supplemental oxygen and may develop chronic lung problems as a result of the disease in some
People who develop sarcoidosis the disease flares initially and then subsides on its own in other individuals sarcoidosis flares up and requires medication to suppress the inflammation and to improve the patient’s symptoms and other manifestations some of these patients then can go off medications and the sarcoidosis will remain inactive up to a quarter of
Patients require ongoing continuous treatment to keep the disease in check and to prevent ongoing inflammation in the lungs or other organs once i got off the hospital i went to see a pulmonologist and i told him i’m in pain i have shortness of breath and i just don’t feel well i was just told that everything was in my head maybe i have a sinus drip i know my
Body i know that i’m short of breath especially when i take a few steps i know pain i wasn’t even given any medication i just started going on with my normal life hoping that this disease would go away sarcoidosis is often difficult to diagnose initially shortness of breath cough and wheeze are the symptoms that we see in other more common respiratory illnesses
Asthma copd or a lung infection sarcoidosis can also cause a variety of symptoms which are not specific to sarcoidosis that is they can be the result of any number of other conditions as well and those symptoms can include fever chills and sweats at night weight loss can occur and fatigue is very common in sarcoidosis this can be a very debilitating symptom
For patients with sarcoidosis that requires treatment so over the next few years my symptoms gotten worse i started having a chronic cough chest pains and pains throughout my body and i would have coffin fits for up to 20 minutes to a half an hour i try over the counter medicines i tried going to the doctors my primary doctor they prescribed me cough medicine
And painkillers but it just didn’t work i started to have scabs in my scalp and little bumps on my eyes on top of my eyelids and on my body and i was going to the doctor to get it treated not knowing this was also sarcoidosis my quality of life was getting worse i felt depressed i was just so tired and fatigued i didn’t want to do anything i didn’t want to get
Out of bed i didn’t even want to socialize according to the american academy of family physicians a diagnosis of sarcoidosis should be suspected in any middle aged adult with an unexplained cough shortness of breath or related symptoms a diagnosis relies on three criteria clinical or radiologic presentation pathology that shows granulomas and an exclusion of
Other diseases such as infections or malignancy the symptoms of sarcoidosis can have a very significant effect on the quality of life of patients with the disease they may suffer from limited ability to exert themselves which can impact the ability to carry out normal daily activities at home or can limit a patient’s ability to work patients may be affected
By symptoms that are more difficult to quantify such as fatigue or a sense of hopelessness or depression it’s very very important for sarcoidosis healthcare providers to recognize the multiple ways in which sarcoidosis can affect patients and to address all of these many manifestations with treatment i woke up in the middle of the night having a corporate fit
And i went to the bathroom and that’s when i passed out i was in icu with a team of doctors and that’s when they found that i had fungus in my lungs and holes in my lungs even though i was sick i felt a little better a little hopeful because i finally found doctors who was taking me seriously and finally getting the care that i deserve the drugs that we use to
Treat sarcoidosis are all designed to suppress the abnormal immune and inflammatory response these include steroid medications non-steroid oral anti-inflammatory drugs and several monoclonal antibodies that target proteins that the body makes that drive the inflammation in sarcoidosis one of the problems with steroid medications is that oftentimes there are
A variety of side effects and this is a significant burden for patients all of the medications that we use to treat sarcoidosis target various components of the inflammatory response that is involved in the disease but what we really need in sarcoidosis is new therapies that more specifically get at the causal pathways in the disease that are associated with
Fewer side effects that are more effective and ultimately they can interrupt the disease and stop its progression it’s very very important for physicians and other healthcare providers who work with sarcoidosis patients to develop a partnership and to work together to control the manifestations of this chronic illness so after i was released from the hospital
I found my dream team i started seeing a cardiologist a pain management doctor a infectious disease doctor and of course i stayed with the pulmonologist specialist i take steroids and medication for my heart and take pain medications yes these medications are helping my sarcoidosis but it also comes with side effects like weight gain nausea and drowsiness
As a sarcoidosis patient my hope is that there will be a better way to manage this condition and manage the disease i am so grateful for the foundation for sarcoidosis research it helped me to find information and introduce me to people that’s going through the same thing that i’m going through and it gives so much information on this disease i volunteer with
The foundation for sarcoidosis research i can use my experiences to help support others what i learned about myself through this journey is that i’m stronger than what i thought i was and i fight to live for more information on sarcoidosis visit accentuate.com and the foundation for sarcoidosis research at stop sarcoidosis dot org and you can always visit our
Website thebalancingact.com we’ll be right back
Transcribed from video
Behind the Mystery of Sarcoidosis: A Rare Disease That Can Cause Shortness of Breath, Chest Pain By The Balancing Act
