Rare disease turns immune system against the body

On the outside, Stephanie Hurst looks like a normal 29-year-old woman. However, given the health problems she's been dealing with recently, she said she actually feels like someone much older.

“Honestly, some days I feel like I'm going to die,” Hurst said. “I'm so, so weak, I have no energy, and I'm just breathless.”

Earlier this year, she was diagnosed with sarcoidosis, a rare inflammatory disease that can affect almost any organ in the body.

According to information from the United States-based organization Foundation for Sarcoidosis Research, the condition causes heightened immunity, which means that a person's immune system overreacts and damages the body's own tissues.

The classic feature of sarcoidosis is the formation of granulomas, which are microscopic clumps of inflammatory cells that group together. When too many of these clumps form in an organ, they can interfere with how the organ functions.

The disease most often affects the lungs and lymph nodes, but can also affect other organs, including the skin, eyes, liver, salivary glands, sinuses, kidneys, heart, muscles, bones, brain and nervous system.

Nobody knows exactly what causes sarcoidosis, although the foundation said some research suggests it's probably due to a combination of factors, including bacteria, viruses or chemicals.

Hurst said many New York City firefighters exposed to the dust at the site of the World Trade Centre Towers after 9-11 have developed the condition.

She said she's heard there are a lot of people in the Greater Sudbury area who also have sarcoidosis, which Hurst said may be due to toxins from the mining industry. Hurst herself used to work for a local mining service company where she was exposed to rock dust.

To raise awareness of the condition, as well as funds for the Foundation for Sarcoidosis Research, Hurst has organized an event which will take place between 2 p.m. April 28 and 1 a.m. April 29 at Little Montreal on Elgin Street.

From 2-6 p.m., the venue's stage will be open to musicians who wish to perform. The cost is $2 for those attending, but free to those under the age of 14. From 6 p.m. to 1 a.m. the cost at the door is $5. 

Hurst has also invited young musicians from Sudbury Youth Rocks to perform during that time slot. She'll be giving a talk about sarcoidosis from 6-6:30 p.m.

After that, a number of musicians and bands will perform, including Stephangelah Band, Hurst's own folk-rock group, where she plays guitar and is the lead singer.

There will also be performances from acoustic blues performer Some Swain, pop-folk performers Chad Landry and Justine Giles, folk performer Gordon Este, a punk rock band called Nothing Good and a rock band called Set.

“There's quite a few different styles of music,” Hurst said. “Hopefully, we can please everyone's palate of musical interests.”

There will also be a 50/50 draw and draws for prizes donated by local businesses.

Hurst said she would have liked to pick a Canadian organization for which to raise money, but there's no organization in the country which focuses specifically on sarcoidosis.

She said she first realized last fall that something was wrong with her, when she began to experience severe back pain and fatigue.

Hurst was eventually sent for an MRI, which revealed swollen lymph nodes, which could have meant she had an infection, a type of cancer called lymphoma or sarcoidosis. An exploratory operation revealed she has sarcoidosis.

“I have stage one sarcoidosis in my lungs,” Hurst said. “I have swollen lymph nodes, but my lungs aren't that damaged yet.”

She said the disease could be affecting other parts of her body, but she hasn't yet been able to see the necessary specialists yet who could confirm that.

In two-thirds of cases, sarcoidosis goes away spontaneously, Hurst said. In the other one-third of cases, the disease comes and goes, or just gets worse.

Because the disease might go away on its own, doctors are reluctant to prescribe her steroids to reduce the symptoms of sarcoidosis, because the medication has such severe side effects.

Hurst said she has good days and bad days, depending on how much her condition is affecting her. When she's having a bad day, she has trouble even lifting a vacuum cleaner or groceries, let alone keeping up with her eight-year-old son, Owen.

Hurst has also been unable to work, as it would be difficult to find an employer who would be understanding about her medical condition. Her love for music has also been affected, as she also sometimes finds it physically difficult to sing.

“People will look at me and say 'You don't look sick, you're fine,'” she said.

“But these symptoms I have are almost identical to someone who has lymphoma. Usually they can't tell between the two, and have to do tests to find out. So you feel just as bad as someone who has cancer, but you're not getting medication to help you.”

For more information about the Little Montreal event, contact Hurst at 705-523-6581. For more information about sarcoidosis, visit www.stopsarcoidosis.org.

Posted by Arron Pickard