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‘There is always hope’

A patient deals with doctors’ appointments, tests and the miseries from the symptoms of the diagnosed disease. To make matters worse, the patient must endure answering the same questions that are asked every time he or she relates the diagnosis made by the doctors — sarcoidosis.

“What?” “How do you say it?” “What’s that?”

Rarely does the patient hear, “I’ve heard of it but I don’t know what it is.”

Even rarer does the patient hear, “I know what it is. I know someone who has it.”

When this is heard, the patient breathes a sigh of relief. Finally someone knows. Maybe someone even understands the complexities of this disease called Sarcoidosis.

This strange sounding disease is an inflammatory illness brought on by a disrupted immune response to a bacterium, virus, fungus, dust, chemical or other unknown invader. The classic sign is seen on X-ray as the formation of little nodules of inflamed tissue called granulomas, which resemble a cluster of grains of sand or sugar. These may look similar to cancerous growths so a biopsy may be done to determine an accurate diagnosis.

The lungs, skin, eyes and lymph nodes are the most common areas of involvement in sarcoidosis with the brain and heart being the rarest.

Sarcoidosis (sarcoid for short) may go undetected, causing no symptoms. It may be found on a chest X-ray as an incidental finding. It may first be diagnosed on an eye exam as sarcoid may cause complicated eye problems, including blindness. A patient may have an acute case lasting up to two years with symptoms coming on suddenly.

In chronic cases, the symptoms come on gradually and wax / wane over years. Fortunately, a large percentage of cases resolve over time, but chronic cases may progress with varying on-going effects.

In rare cases, a heart, lung, or kidney transplant may be required. The death rate is low at about 6 percent of cases.

This disease is diagnosed utilizing many different tests depending on the individual case and physician’s recommendation. Always included are a complete patient / family history, review of symptoms, and medical exam. Other evaluations will vary but may include: lab studies including an ACE level (angiotensin converting enzyme) and sIL2R (soluble interleukin 2 receptor); lung function tests; imaging including a chest X-ray and CT scan; an EKG (electrocardiogram) as a baseline heart test; procedures to obtain biopsies; and advanced eye tests by an eye specialist (ophthalmologist).

Sarcoidosis is called “The Masquerader” because it may resemble other diseases, including cancer. Symptoms may vary from person to person and season changes may trigger different symptoms. More common symptoms include an overall sick feeling, fever, muscle / joint aches, appetite/weight changes, dry cough, shortness of breath, and the ever-overwhelming fatigue.

Other symptoms might be night sweats, weakness, skin lesions, dry / blurry eyes, hoarseness, headaches, seizures, ringing in the ears, irregular heart rhythm, and the ever-overwhelming fatigue. Basically, any symptom, no matter how small, or weird, is sarcoid until proven otherwise.

One may wonder why “the ever-overwhelming fatigue” is listed twice. Whether a patient has a short-term or long-term case, the fatigue is overwhelming. Many diseases induce fatigue, but the fatigue of sarcoid is indescribable. It’s crushing. And naps don’t come close to helping.

Treatment involves daily adjustments to diet / nutrition, exercise, cutting back on alcohol / smoking, sufficient water, and adequate sleep. Specific treatments may focus on individual symptoms. Overall, corticosteroids may be used (prednisone) as well as different chemotherapy drugs for more severe cases. Newer treatments include Remicade or Humira, including others.

Integrative treatments are being explored, such as Taurox for fatigue and facilities such as The Cleveland Clinic’s new Functional Medicine Center are evaluating others.

This disease was originally discovered in the 1860s by Dr. Jonathan Hutchinson at King’s College in London, England. Over the years, various ideas on the exact cause have been theorized with many treatments tried. Thankfully, a large number of cases resolve with minimal effects. However, chronic cases may have long-lasting, and many times, irreparable effects.

As other chronic illnesses, sarcoidosis may affect every aspect of a person’s life such as activities of daily living, family / friend relationships, career / job, finances, and spirituality. It’s difficult to ask for help, so as with all challenges, the patient hopes for support, empathy, and compassion.

No one knows for sure the cause of Sarcoidosis, and there is no cure. But, there is always hope.

Why do I know this? Because I have endured sarcoidosis and neurosarcoidosis (brain involvement) for a long time. It has affected every area of my life. But I will never give up. Why? Because there is always hope.

Dr. Kutcher lives in Hermitage, Pa. Contact her at 724-342-4964 or by email at drbkutcher@gmail.com.

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