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Turning the tide for rare disease

Jessica Massengale: living strong with scleroderma

Since being diagnosed with scleroderma in 2010, Jessica has worked hard to stay positive and inspire her community. She explains how she is working to shine a light on the unmet needs of her community through a novel digital health initiative

By Geoff Case

The slow onset of scleroderma

When Jessica’s joints started hurting at the age of 19, she put it down to burnout—she was studying hard to become a teacher and waitressing in the evenings. In fact, Jessica was experiencing the first symptoms of scleroderma, a rare autoimmune connective tissue disorder.

Scleroderma causes hard, thickened areas of skin and sometimes problems with internal organs and blood vessels. There are several types of scleroderma, and these vary in severity, with some leading to severe and life-threatening problems.1

Jessica’s early symptoms included her hands getting cold and not being able to close into fists. She also developed white patches on her skin, leading to a misdiagnosis of vitiligo.

Three years later, Jessica developed a sinus infection and visited her doctor. Blood tests revealed extremely high levels of autoimmune markers, so she was referred to a rheumatologist, who diagnosed her on the spot.

With her only information on scleroderma being a pamphlet from the rheumatologist, Jessica turned to the internet to find out more. “That was the worst thing I could do, because there was a lot of negative stuff then about death and no medication. And I was very depressed,” she says.

Jessica describes how she went through the five stages of grief—the first being denial. Initially, she refused to accept that she would become sick and lived her life like any 22-year-old would.

However, as the years have passed, Jessica’s scleroderma has slowly progressed, tightening her skin to the point that she cannot uncurl her fingers at all, making it harder and harder for her to do things for herself. Lifting her arms is extremely difficult and sitting on the ground cross-legged has been impossible for years. Her skin splits with painful wounds and then takes months to heal.

For a while, Jessica’s condition seemed to be prevailing. Her ambition to become a kindergarten teacher had to give way as her ability to use her hands decreased and her mobility deteriorated. But Jessica worked determinedly to graduate with a hard-won bachelor’s degree.

Scleroderma Strong

Jessica’s Facebook page, Scleroderma Strong, started out as a way for her to keep her friends and family informed about what the condition is and how it was affecting her, but then its focus changed. Jessica wanted to showcase her determination to live the best life that she could, despite her condition.

“People with scleroderma gravitated towards Scleroderma Strong because we’re all hiding, because we’re all deformed. Some horrible stuff happens to some of us, like we get our fingers, feet or legs amputated… I think the Facebook page was powerful for our community because they saw me out in the public eye, opening up about my experience,” she says.

Enjoying a night out in Miami at a concert by The Weekend

Over time, Scleroderma Strong has become a nurturing and empowering community for those affected by the condition. Jessica’s hopeful message of strength in adversity is encapsulated in one of her posts, in which she quotes the Stoic philosopher Marcus Aurelius: “The blazing fire makes flames and brightness out of everything thrown into it.”

Jessica has also worked hard to post content that educates the community about the diverse medical complications that may accompany their condition.

“I was so shocked when I posted a video and some people were like, ‘Oh, I’ve had scleroderma for 10 years and I didn’t know that’. It’s just so crazy how little information trickles down.”

Social media listening

While taking part in an annual walk for scleroderma—an event she loves—Jessica was introduced to Maria Picone, co-founder and CEO of TREND Community. Maria explained how her company uses a community-driven approach to accelerate the discovery and delivery of new treatments. Its technology analyses anonymised conversations on social media within patient group communities to understand patients’ lived experience and their unmet needs.

By way of example, Jessica explains how unstructured data from conversations on Reddit about scleroderma were collected, anonymised and analysed. The analysis shone a light on how scleroderma patients strongly preferred one medication over another. “If we can get this finding published, then rheumatologists can be better informed when considering treatment plans,” Jessica says. Other valuable insights were around things like gastrointestinal issues and mental health.

“I think what TREND is doing is so inspiring because they’re listening to us. There’s a big gap between rare disease patients and pharma, or rare disease patients and the medical community. You can go on Google, you can read your medical textbook, but it’s not going to tell you what patients are going through on a daily basis.”

Jessica has been greatly impressed by the potential of social media listening to shed light on patients’ lived experience. Indeed, she feels that the data could be transformational. As a patient ambassador for TREND Community, she is now working to get patient communities on board with this health initiative.

“My hope is that we can bring something to the medical community to improve our quality of life or extend lives,” she says.

Through her work with TREND community, Jessica hopes to give doctors and pharma companies much-needed insight into the reality of living with rare conditions such as scleroderma.

Raising awareness about scleroderma at World Orphan Drug Congress

References

[1] https://www.nhs.uk/conditions/scleroderma/

Links

https://www.facebook.com/MyJourneyWithSclerodermaByJessica

https://www.scleroconnect.com/

https://trend.community/


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