'We are very, very small, but we are profoundly capable of very, very big things'. - Stephen Hawking
About me - My name is Denise Ryan, I'm 33 years old. I'm not a wife or a mother, I don't have a career. I can't do the normal social things that people do like going for dinner or drinks, or taking new classes or trips. While life is definitely not what I wished it would be, fundraising to go alone half way across the world for medical treatment has made me a stronger person. So while I would of course much, much rather be doing any of the things we all want out of life, I am at least prouder of myself now than I have ever been.
A donor sent me a message a while back saying he had been meaning to get in touch for a long time, but hadn't known what to say other than 'keep going', but that saying that would be like 'telling the Olympic runner Usain Bolt, to keep running'. That comment has really meant a lot to me and I think about it often, because you can't go through something like this without perseverance.
I suffer from a very aggressive and advanced stage of Lyme disease, lifelong gastrointestinal and immune system dysfunction. I need to raise €100,000 to go to Seattle for 10 months of specialist treatment as soon as possible, without it my prognosis is terminal.
Updated: I had to raise the goal so that I can afford to continue my medications and to hopefully go back to Seattle for surgery with my amazing gastroenterologist at the University of Washington Hospital. My entire digestive system is severely damaged from multiple infections and having been sick for so long, that I really need surgery as soon as possible. If my muscle and bone continue to degenerate from malnutrition caused by malabsorption, I won't be able to fight this. This is a huge opportunity for me to go to one of the best hospitals in the U.S., I have to try to get there and hopefully they can do something that will save my life.
How I contracted Lyme disease -
I moved to Toronto for work in 2009, I stayed for 4 years and made great friends and memories. I also had many bug bites including a tick bite, but I had never even heard the word 'Lyme' then.
I spent the last two years of my Canadian adventure going to doctors and consultants, as my health kept going downhill. I had to come home to Ireland because my illness was getting out of control. I was heartbroken because I'd just been accepted into college in Toronto and was so excited to go there. Instead I spent the next year back in Ireland going to more doctors and hospitals searching for answers, searching for help.
In June 2014, I was finally diagnosed with Lyme disease. But by that time the infection was very widespread. My GP in Ireland sent my blood to an accredited specialist lab in Germany where I tested positive, which was confirmed again by an Infectious Disease Consultant in Dublin. My blood tests also showed multiple other serious bacterial and viral infections.
How my case became so severe -
As I went so long without a diagnosis and without treatment, and have debilitating gastrointestinal problems caused by the infections, along with a family history of autoimmunity, things have progressed to a life threatening state. I have severe gastroparesis, arthritis, severe osteoporosis, exhaustion and muscle wasting. I've also developed neurological symptoms as the Lyme bacteria has spread to my central nervous system. Without being able to absorb proper nutrition, my immune system can't fight the disease and my body can't rebuild itself.
Why the U.S. -
After seeing countless doctors, specialists and consultants all over Ireland, the UK and Canada, I found hope. That hope resides in Seattle, where I spent 3 months last year getting treatment after raising enough funds to go. Finally, I found medical doctors who specialize in my particular infections and a gastroenterolgist at the Univeristy of Washington Hospital who specializes in my gut problems. As I contracted Lyme disease in North America, they have much greater knowledge, experience and understanding of the lifecycles of the bacteria. They know which medications to use and when, to treat the infections and avoid bacterial resistance to the antibiotics. The U.S. hospitals also have much more extensive diagnostics and treatment/surgical options for gastrointestinal diseases.
What the treatment will be -
Due to the severity of my case, I need to return for 10 months of intensive treatment.
This would involve :
- IV antibiotics for the multiple infections, to bypass my debilitated gut.
- IV nutrients to help build my immune system and stop my body so rapidly degenerating.
- Extensive bloodwork for infections and organ function, medical testing at local labs and hospitals + constant supervision.
- Appointments with specialists at the University of Washington Hospital and Puget Sound Gastroenterology - Including two gastronenterologists (one is a motility specialist, the other is a mast cell disorder specialist), an endocrinologist for my infertility and bone density issues, an ENT doctor (ear, nose, throat) for the recurrent localized infections I have on top of the systemic infections
- Physiotherapy to help keep my muscles and joints moving because I can't move much physically myself.
- Surgery(s) to try to rectify some of the damage done to my digestive tract and hopefully help me be able to eat again.
I'm currently fed through an NJ tube, which is a feeding tube that goes through my nose and into my small intestine because I can't eat due to the severe damage that the infections have caused my digestive system.
My hope for the future and how you can help -
It's a huge mountain to overcome, but I'm determined to get through this no matter how hard it is.
I want so much to be able to have a job and spend time with the people I care about. To have some independence and some quality of life. To replace the vomiting, pain, inflammation, palsy and tremors, with being healthy, happy, and making plans to look forward to. It would be really nice to be able to eat again!
Time is rapidly running out for me. So every donation however small is a tremendous help! All funds raised go towards my urgent medical treatment.
Looking at it like needing 10,000 tenners (€10/$10/£10) makes it seem a little more possible!
You can also donate directly to -
Denise Ryan Lyme Fund
From the bottom of my heart, thank you all so much,
- NANCY HORAN
- Áine Kirrane
- Neil Wallace
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