All Grown Up with JRA / Stefanie’s Road to Motherhood

All Grown Up with JRA / Stefanie’s Road to Motherhood

The road to motherhood can be filled with obstacles. For Stefanie, a 28-year-old lifelong juvenile rheumatoid arthritis patient, navigating the path of arthritis has been overwhelming because of a stark lack of resources available for young women wanting to start a family while facing the disease – something Stephanie desperately wants to do one day. Despite the ambiguity that lies ahead of her, Stefanie feels grateful that her lifelong experiences with JRA have given her a unique perspective on life because it puts her in a position to be a prominent leader among young women with arthritis.

Since recently constructing a blog, All Grown Up with JRA, she hopes her new platform will alleviate some of the uncertainty for other women finding their way to motherhood and is determined to provide the same resources for others that she has always sought for herself.

“When I searched for stories of other young women with RA, I did not find a lot of support,” noted Stefanie. “The demographic of 25-35-aged women with arthritis is lacking in resources and support, especially for those hoping to start a family. I hope that sharing my experiences of navigating family planning will provide hope, resources and support to other young women facing similar situations.”

Stefanie was just thirteen months old when she was diagnosed with pauciarticular juvenile rheumatoid arthritis; meaning that four or fewer of her joints were affected by arthritis in the first six months of her diagnosis. For the next 27 years, her disease has never relented or gone into remission, which has ignited other health complications, including uveitis and glaucoma.

During Stefanie’s childhood, there were not many treatment options available and she was forced to take over-the-counter pain relievers and gold injections. As more medications became available, she tried nearly all of them but eventually settled on a biologic that stabilized her condition. A critical concept that Stefanie discovered was that since her disease was always changing, her treatment plan must constantly change too.

“Like many aspects in life, you need to be able to adapt to changes as your disease and life evolves,” advised Stefanie.

Stephanie-Larsen-JRA

Stefanie understood enough about her medications to know that continuing to take them during a future pregnancy could potentially cause harm to an unborn child. However, she was disheartened when her doctors told her that there was not enough research to know precisely what the long-term side effects the medications would cause. Because of the dire need for more research in the area of pregnancy, Stefanie strongly supports the Arthritis National Research Foundation and advocates for future research studies to be focused on treatment options and side effects of medications in pregnant women.

“Although I am grateful that research has come a long way in developing safe and effective treatment options since my diagnosis 28 years ago, there is not enough substantial research or evidence pointing to safe treatment options for pregnant women,” said Stefanie. “There is a pressing need for more research in this area, since the uncertainty makes it extremely difficult young women to decide upon a treatment plan.”

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Since Stefanie debuted All Grown Up with JRA in January of this year, she has already begun to establish herself as a resource for those newly diagnosed patients who are seeking advice or are in need of support. Her blog features her experiences, feelings, and tips about living as an adult with JRA. In the future she intends to share her journey of pregnancy and parenting as well. Beyond her blogging efforts, Stefanie also felt it was her duty to share her story with the Arthritis National Research Foundation after reading about fellow blogger and Cure Arthritis ambassador, Andrew Lumpe, Ph.D., creator of Living with Rheumatoid Arthritis.

Having managed her JRA her whole life, Stefanie cherishes the unique perspective that she believes her disease has given her. Whether it’s her ability to recognize what truly matters in life, remain calm under stress, live completely in the moment, or simply enjoy every aspect of her life, she has emerged from the challenges of her disease with a relentlessly positive attitude. Though she admitted that she still has days where she struggles just like anyone else, she knows that her arthritis is no match for her upbeat nature.

“Often patients with chronic illnesses are taught not to complain and to put on a tough face all the time,” Stefanie shared. “It’s okay to say ‘Arthritis Sucks!’ because sometimes it does. However, being able to keep a positive outlook in life will enable you to overcome the rough patches.”

Through creating her new blog and sharing her story with ANRF, Stefanie is well on her way to ensuring that young women like her have access to the resources they need to feel confident about navigating the road to motherhood. Stefanie’s ardent blog readers can trust that any content she shares will be filled with wisdom, strength, and heaps of positivity.

“My intention is for my blog not to be about how my JRA has affected me, but rather about what I have done to affect it,” her blog reads. “Although I have not known any life besides one with JRA, I would not ask for it any other way.”

Does Stefanie’s leadership inspire you to pursue your dreams despite arthritis? We want to hear about YOU!


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ANRF
Article Author
Arthritis National Research Foundation
arthritisresearch@curearthritis.org

The Arthritis National Research Foundation's mission is to provide initial research funding to brilliant, investigative scientists with new ideas to cure arthritis and related autoimmune diseases. Writing articles about the patients affected and the science being done to find a cure shows why we need to come together to #CureArthritis!

2 Comments
  • Avatar
    christina
    Posted at 07:49h, 17 May Reply

    I am 42 mother of three. Had JRA at 8,
    You got this… 🙂 life is what you make it…

  • Avatar
    John P. Lynch
    Posted at 09:58h, 13 June Reply

    Christina, Thank you for sharing your story and creating a blog. Both are very important in helping to find the cure for JA. In my memoir there are several vignettes about young women who have JA. Two are mothers. What they say about living with JA and having children may help you in your quest. As a father of a daughter and a son, I, too, have been concerned about their well being and the effect my JA has had on them. Now in their mid-30s, they still enjoy the good health they’ve always had and their relationships with others are very meaningful. Please continue with your noble mission. I sincerely wish you great success. John P. Lynch

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