This is Jo. She's awesome! But she was thought to have a very rare disease called Behçet’s Disease and she needs our help to get the medical treatment that her doctors have advised her to pursue.
There are under 20,000 people in the United States with Behçet’s Disease. A disease is classified as rare when there are under 200,000 people affected by it. So, even among rare diseases, Behçet’s is rare! Most local doctors and medical staff have either never heard of Behçet’s, only read about it, or have treated a limited number of patients with it. Jo's rheumatologist suggested that she see a Behçet’s specialist at NYU based on the rarity of the disease, allergies that Jo has to the typical treatment for Behçet’s tried so far, some atypical symptoms that Jo is presenting with and other complicating diagnosis like Sjogren's Syndrome and Small Fiber Neuropathy.
PLEASE SEE THE UPDATE BELOW regarding Jo's visit to NYU and being UNDIAGNOSED with Behcet's.
Jo became increasingly ill and in pain since she was hospitalized with pancreatitis in April of 2017. She was bounced from specialist to specialist being given a different answer each time. Never being one to give up and thinking that her illness was due to the pancreatitis, Jo researched the best place to go and ended up at the Mayo Clinic in Minnesota.
She traveled to the Mayo Clinic three times over three months, and twice, her wife Christine joined her. It was quite expensive to travel between two small airports and stay at least a week each time. She didn't tell anyone until recently, but she borrowed from her retirement savings to fund the trips. She walked away with a diagnosis of copper deficiency. After months of copper supplementation and 15 five hour infusions, her copper levels normalized, but Jo was sicker and in more pain.
Over the past 20 months, she has been diagnosed (and undiagnosed) with a variety of ailments. It's been a grueling journey filled with tests, copays, infusions, copays, doctors visits, copays, medication, copays, pain, frustration, and other life changing family situations that are heartbreaking for Jo to not be able to step in and support.
Through Jo’s persistence, relentless pursuit for answers, and belief in herself, she found a wonderful team of physicians right in her hometown of Rochester, NY who figured out her diagnosis of Behçet’s Disease, which is a VERY RARE, relentless and notoriously painful anti-inflammatory vascular disease with no known cure that can affect any and all body systems.
For those who know Jo, you won't be surprised that she is willing to turn over every stone to find the right treatment. For those of you who don't, she is an avid runner, political activist, Italian and Spanish teacher, traveler, advocate for social issues and has always been a very busy bee. But this illness has taken that away from her for the past two years.
She's a volunteer and leader, a dependable friend and helper, and a beacon of goodness with a real zest for life. What's not to love? People know that they can count on Jo to always be there to help not only in her actions, but with her words, her kindness, her loyalty and her presence.
Besides all the ways that she's wonderful on her own, she is also half of a dynamic duo as the loving wife to the very dedicated Christine. Christine isn't only Jo's #1 fan, she's the thread keeping things together right now, and is Jo's biggest support system.
Jo has faced and overcome many challenges in her life which she honored by having this phoenix tattoo placed on her shoulder. What she didn't realize is that the tingling sensation that postponed her getting the tattoo was the start of her most challenging obstacle yet and now she needs our help to rise from the ashes once again.
Jo has been working closely with her employer who has shown great compassion and understanding during this time and wants to make sure that everyone understands that she is still employed and covered by her union contract but the copays, hospital stays and travel are taking a financial toll. It is not surprising that several people have asked how they can help Jo during this time since she has been there for so many in so many ways. This would be an excellent way to show our support. If you are unable to give financially and/or would like to receive updates should there be other opportunities to help, please contact me at [email redacted] with your name and location.
Thank you for supporting Jo so she can get back to doing as many of the things that she loves as soon as possible!
Jo's Friend (and 5th cousin according to Ancestry DNA!!!)
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