Another Life Lost To Lupus

I am honored, humbled and grateful that, in response to my videos and blogs about Lupus, people across the country and around the world have reached out. They’ve asked for advice, told me about their symptoms, offered to help in the fight against this mysterious and deadly disease and, most often, asked me about my Benlysta infusions and if I think they’re working.  I get emails and messages through my website, Facebook and Twitter. Sometimes, I get so many that I’m not able to respond immediately.

A couple of months ago, I received a lovely email from a young man named Manichan Singh from the Caribbean Islands of Trinidad and Tobago. He wrote to me about his 27 year old wife, Stacy, who was diagnosed with Lupus when she was just 17 years old.  He said he was reaching out because he loved her dearly and would do anything to help her.

She had recently experienced an awful flare of symptoms.  Manichan said that Stacy’s doctor had prescribed such a high dose of steroids that her body had become terribly bloated.  She did not let this get her down… she did not want Lupus to define her.  Stacy was very ambitious. She dealt with Lupus gracefully while running a business, getting her degree and caring for her 5-year-old daughter.

When we returned from vacation I sat down to respond to the emails that had filled my inbox. I wrote to Manichan to ask how Stacy was doing and to recommend websites that might give her the information that she needed and online groups that could offer support.  I gave Manichan my contact information and told him that I looked forward to connecting with Stacy through email and Facebook.

I never expected the email that I received a few hours later.  With a heavy heart, Manichan wrote to tell me that while it looked like Stacy would recover from her Lupus flare…her condition had deteriorated.  When she began experiencing terrible chest pain, a nurse gave her a shot of pain medication and Manichan said it changed everything.  He said Stacy was never the same after that.  She reached out for Manichan’s hand and asked him to pray for her.  Manichan’s letter went on to say that those were the last words Stacy ever said.  The next day, she passed away.  She was just 27 years old.

I was heartbroken, when I read that letter… for Manichan, for his little girl and for Stacy who was a fighter but simply didn’t have the medical care she so needed and deserved.  In his letter Manichan wrote, “It kills me every day that I couldn’t do more for her.  I wanted to bring her up to Florida for treatment due to in Trinidad, they don’t have much treatment for Lupus patients nor a foundation for patients.”

Even in his grief, Manichan offered to speak to others about the toll Lupus took on his beautiful wife and the importance of good health care and information.

We are fortunate, in the United States, to have access to some of the best rheumatologists and Lupus specialists. Lupus research is being conducted by the National Institute for Arthritis, Musculoskeletal and Skin diseases as well as other government agencies, public and private organizations, companies, universities and colleges.  Participation in clinical trials is possible for many patients who qualify. There are non-profit health organizations dedicated to finding a cure, providing resources and raising money for Lupus research.  Finally, there are support groups across the country and online.

Yet, a cure has still not been found for this mysterious, painful, debilitating and deadly disease.

The slogan of the Lupus Foundation of America’s awareness effort says it all…”Someone You Know Has Lupus.”  Lupus touches the lives of millions of Americans and you’d never know the pain they suffer, every day,  just by looking at them.  That’s why many call it the “Look Good Feel Bad Disease.”  I just smile now when someone says, “Juli, you look great! I’m so glad you’re feeling better!”  Maybe, when you’re diagnosed with Lupus, they should hand you a t-shirt to wear that says, “Trust me, I don’t feel as good as I look!”  Then maybe people will understand.  Just look at the gorgeous picture of Stacy above…you would never know how much she was suffering inside.