Here at SAVE JON, we are not working to save just Jon. We are working to save all PSC patients. Furthermore, we are working to build tools that will save individuals with other rare, uncharacterized diseases in the future: our aim is to develop a model for tackling these diseases faster and more efficiently.
Jon is our in-house poster child for PSC. However, there are many other faces attached to PSC. Another fellow PSCer we have been in contact with is Lucas Ramage. Lucas and his family have been battling PSC since 2009.
Like many PSCers, Lucas also has Ulcerative Colitis (UC). Lucas explained, “My colitis has been more active in the last couple of years and my hepatologist (who is also an expert in PSC, Bertus Eksteen) felt it was my colon’s condition which has led to more rapid deterioration of my liver (which is cirrhotic).” In addition to the poor quality of life, risk for complications, and risk for colon cancer that accompany ongoing active colitis, Lucas’s hepatologist also pointed out that there is evidence suggesting that active colitis is associated with the recurrence of PSC following a liver transplant. For these reasons, Lucas elected to undergo total colectomy at the end of March – a big decision that brings lifestyle changes of its own, but one that he felt was necessary.
Lucas spent 5 weeks in hospital with additional complications following removal of his entire colon, including a blockage in his small intestine, a blood clot in his portal vein and a Staph infection in his blood, among other things. In spite of the complications, he battled on with a strong, sympathetic and supportive network of family and friends.
To celebrate his 38th birthday and release from hospital, Lucas and his family wanted to do something to contribute to curing PSC, and take back some control over the disease that had recently strengthened its grip on their life. Lucas’s wife Chelsea reached out to us to see how they could get involved with pushing our research forward.
We gave Lucas and Chelsea a small review of our ongoing projects, to see if there was anything we were working on that they would like to contribute to specifically. They decided that they wanted the money they raised for SAVE JON’s mission to go wherever it was most urgently needed. They threw a birthday party for Lucas, and asked guests to give to SAVE JON for a birthday gift. We created a personal webpage for Lucas, where guests could send him messages and make donations.
The response of Lucas’s friends and family was tremendous. They rallied together and made a terrific showing of what can be done when people are committed to helping their loved ones. They raised enough money to help us answer important questions about PSC – questions like, ‘What is the gene(s) that Lucas has that made him susceptible to PSC?’ and ‘What is the connection between PSC and IBD?’
Lucas shared with us, “I've been following PSC happenings for years and stumbling upon the SAVE JON site was very exciting for me personally… I’m very grateful that you helped us create a situation which allowed us to direct people to a place to give.”
Lucas’s friends and family also showed something else: the strength of a support system. The words and sentiments they sent to Lucas through his personal page conveyed the type of solidarity and camaraderie that really can be a transformative force. We collected them together and made them into an e-book for Lucas to keep, reminding him that he is not fighting PSC alone. The people around him want to help him fight it. We’re all fighting it.
It is thanks to people like Lucas, and his family and friends, that we can really work hard to save Lucas, save Jon and save countless others.
If you would like to do something similar to Lucas and his family, please reach out to us.
Also look out for our ‘Ways to Plug In’ paper, a document we will be releasing later this year to provide information for patients about the variety of ways they can get involved with our research and participate in ending PSC once and for all.
Cheers to Lucas! - and to all PSCers living life to the fullest at every opportunity.
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