Project Scleroderma | Jennifer’s Story
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Jennifer’s Story

46-year-old Jennifer Hulme was born and raised in Annapolis Valley, Nova Scotia, where, in her junior year of high school, she met her future husband Steve. Jennifer and Steve have now been together for 30 years and married for the past 18 years. The couple currently lives in Nanaimo, British Columbia and both have full-time careers in health care.

Jennifer and Steve live a very active lifestyle and Jennifer is a self-proclaimed “health nut”, who enjoys cooking gourmet foods and savoring fine wine. She says she is “a pescatarian who focuses on organic whole foods as much as possible.”

Being that Jennifer is incredibly active and obviously very health conscious, it is not difficult to see why it would come as a huge shock to her when she was told she had an autoimmune disease.

In June 2014, while training for an upcoming marathon, Jennifer says she began to notice unusual muscle pain and stiffness, typically occurring early in the morning and at times even causing her to fall on her face as a result of unexpected muscle weakness. She then developed puffy hands and feet, followed by symptoms of Raynauds in her hands and feet as well. (Raynauds is a disorder that affects the blood vessels in the fingers and toes).

Jennifer’s journey to an explanation for these symptoms has been rather complicated, as is the case for many patients who deal with autoimmune related issues.

In August 2014, after blood results indicated Scleroderma, Jennifer’s physician, who had some previous experience with the disease, proactively arranged a rapid referral to a rheumatologist due to the quick onset and increase of her symptoms.

The rheumatologist diagnosed Jennifer with Diffuse Scleroderma, giving her a “worst case scenario” prognosis.

In October of 2014 she had a follow-up appointment with a different physician, also a rheumatologist, who then diagnosed her with evolving CREST Syndrome. This doctor, who Jennifer says is very experienced and highly regarded, was honest with Jennifer and told her that she did not have much experience with Scleroderma and, as such, referred her to see Dr. Jim Dunne at the Vancouver Scleroderma Clinic located at St.Paul’s Hospital in Vancouver, British Columbia.

This led Jennifer to her most recent appointment just a few weeks ago with Dr. Dunne. She says, “this appointment was like a breath of fresh air, not because I was any better, but because I finally had an opportunity to talk to someone who was well experienced with what I was dealing with and, most importantly, willing to take the time and answer my questions.  He informed me that I do not ‘yet’ have all of the 9 point scale criteria for a full diagnosis of Scleroderma, according to the 2013 ACR/EULAR Classification Criteria.  Consequently, I am now diagnosed as having Undifferentiated Connective Tissue Disease (UCTD) with a ‘significant’ likelihood that it may become full blown Scleroderma over the next six months – of which close follow-up is very important.”

As a result of her symptoms related to Scleroderma, Jennifer has since left her job as a pharmacist and now relies on long-term disability. She says, “I do not see myself being able to resume my career any time soon, if ever. I likely will never be able to run again and can tolerate a mild hike for 5 kilometers at best, with my knees or lower legs going numb typically after three kilometers.”

Having to modify their active and adventurous lifestyle together has not been easy for Jennifer and her husband, who say they love to be “out sailing, cross country running, mountain biking, gardening, or simply hiking with our dog and exploring the world!” Yet, the couple remains determined to find ways to allow them to still enjoy this lifestyle together in any way they can.

After some extensive research, Jennifer and Steve finally came upon what seemed like the perfect solution – the semi-recumbent style of tandem biking.

“A traditional tandem bike never appealed to us” says Jennifer. “It is too large and bulky; one person is always facing the backside of their partner. It’s not naturally conducive to casual conversation; and, the traditional upright riding position is now very uncomfortable, if not intolerable, for me.

The semi-recumbent tandem bike, seen in the picture below, addresses all that and more.

Jennifer explains, “It is much more compact in size and inherently friendly for casual conversation. Both riders truly share a mutual riding experience. Plus, it allows the stoker (secondary rider) to simply stop pedaling and rest whenever they feel the need.  The latter benefit is critical, as it is the only way I would safely be able to ride a bike again – or anyone who may have an autoimmune disorder; related medical condition that causes fatigue / muscle atrophy; physical challenges of some sort; or even short term injuries!”

There currently are several manufacturers of a semi-recumbent tandem bike but, they are either in Europe and only offer a static, one-size-fits-all design or they are custom built with electric assist being an afterthought. And, when you factor in shipping and related cross border duties, the expenses can be extensive.

What Jennifer and Steve have found is that it is more economical for a couple in their position to simply have a semi-recumbent tandem bike custom built by a local bike designer. Jennifer says, “You end up with a far better product that is custom fitted according to each users specific needs.”

Inspired to create a product that will not only help them in their own situation, but also in hopes of helping others dealing with similar circumstances, Steve is currently working to develop a prototype design to be open sourced, so it can be duplicated and modified by any couple in a similar situation anywhere in the world with current ‘off the shelf’ materials and a local bike manufacturer.

“It is definitely a small, specific niche market – but incredibly versatile for anyone who may enjoy biking together.  Plus, the substantive improvement in quality of life and therapeutic benefits for someone who may have medical/physical issues that would normally restrict them from any such physical activity is enormous,” explains Jennifer.

Developing both the prototype bike and web design to keep it ‘open sourced’ and available to all is estimated to cost around $25,000. And, therefore, Jennifer and Steve are currently seeking donations worldwide to help make this project a reality and further raise awareness for both Scleroderma and the myriad of autoimmune disorders in general.

For more information on Jennifer and Steve’s project or to help support them in their mission please visit www.sherpasrt.com

For more information about Scleroderma, patient support groups, Scleroderma treatments and the research that is being done to help cure this disease please visit www.SclerodermaAware.org

Christy
rachel@missmerkledesign.com
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