Denise Ryan's Medical Fund

€31,204 of €150,000 goal

Raised by 883 people in 11 months
About me - My name Denise Ryan, I'm 34 years old. I'm not a wife or a mother, I don't have a career. It's been 6 years since I've been able to do the normal things that people do like going for dinner or drinks, or seeing the world. 

I started getting very sick while living in Toronto from 2009-2013. I'd built a whole life for myself there, it had become home. I'd just been accepted to start college when I got too sick to work and had to leave my life to come back to Ireland to live with my parents. Over the next few years my illnesses progressed very quickly and I've been completely reliant on my mom and dad to help me shower, get up and down the stairs, get dressed, crush medications to take through my feeding tube, basic things I wish so much that I could still do myself.

In hindsight some of my illnesses had been coming on a long time. But, life wise, going from living half way across the world in Canada to a month later being back in Dublin, bed bound in my parents house, vomiting all day, being in horrible pain and experiencing incontinence and crushing fatigue was a real shock. And a wake up call that something was very, very wrong.

^^ when I was living in Toronto, to just 2 years later when I weighed 5 stone and my hair started to grow back after losing it.

In 2014 I was diagnosed with late stage Lyme disease and it's co-infections, in 2016 I was diagnosed with severe gastroparesis (stomach paralysis), severe osteoporosis, muscle wasting and malabsorption. At that time I weighed just 5 stone (70lbs) and had lost all my hair. I've developed crippling fatigue, arthritis, heart complications, along with speech + memory problems from Lyme disease spreading to my neurological system and it's now effecting the function of my left eye. In 2018 I was diagnosed with an autoimmune disease, mast cell activation disorder and potential Chronic Intestinal Pseudo Obstruction. 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.

Before I got sick I never asked anyone for help with anything, but if I don't ask for help now, my prognosis is terminal.

Spending years trying to find doctors in Ireland that could help me, I learned the hard way that there were none and that healthcare here it so far from what it should be. 7 gastroenterologists refused to even see me because they said they knew nothing about gastroparesis. My local politician appealed to the Irish Minister of Health for help, but the government here do nothing for patients who have to travel to America because they can't get the medical treatment  they should be able to get. No-one should have to travel 4,520 miles for healthcare.

^^ I have muscle wasting from malabsorption and whole digestive tract dysfunction 

After fundraising with my previous GoFundMe page for the last 3 years I've been able to go Seattle to see 2 gastroenterologists who are specialists in motility disorders and immune system disfunction and to see my Lyme disease doctor. As unbelievably tough as it is I've had to go alone when I travel for treatment because it's expensive for my mom to be able to come with me and every penny goes to my medical treatment. 

I'm incredibly grateful to have these amazing doctors but it's been really hard to make progress because the damage that's been caused to my digestive system from being so sick for so long, is spreading. At this stage I need multiple surgeries so I've had to open this new GoFundMe page.

^^ my NJ tube, I mix white powder with water and it's runs through a feeding pump into my tube. This is how I "eat".

I've also recently been diagnosed with an autoimmune disease, which could be Lupus or the early stages of Scleroderma, myself and my doctor's aren't sure which yet without the specific tests and biopsies. My uncle passed away from Scleroderma, it's a brutal disease so to have that on top of my current illnesses could be fatal. I also need a surgical test to find out if I have a disease called Chronic Intestinal Pseudo Obstruction (CIPO) which is another life alternating illness and my doctors think this could explain a lot of my symptoms. It's diagnosed by taking a deep surgical biopsy of the full thickness of a part of the intestinal wall.

^^ my stomach is extremely distended because of inflammation and damage that's getting worse all the time. It's very painful and makes it hard to breathe as it pushes up against my lungs.

The urgent medical treatment this page will fund -

I have to return to Seattle asap for 6 months to have multiple surgeries and IV treatment:
- Surgery to hopefully help me be able to eat again and the surgical test to diagnose if I have CIPO
- Appointments with my specialists at the University of Washington Hospital and Edmonds Hospital
- Biopsies to find out which autoimmune disease I have
- IV antibiotics for Lyme disease and multiple infections
- IV nutrients to help build my immune system and stop my body so rapidly degenerating.
- Extensive bloodwork, medications and medical supplies
- Physiotherapy for severe muscle wasting and joint pain
- Flight and accommodation

^^ Lyme disease can cause carditis and heart complications. Babesia, a co-infection of Lyme disease can also cause heart palpitations. 

really need your help -

I'm determined to continue to fight for my life. The way things are, this is not living. I've lost so many years to these illnesses and they've taken all the good from my life. I want so much to be able to spend time with the people I care about, to have a job and to be healthy. But time is running out for me.

No donation is too small. It'll take a community to reach this goal so if you can help, or know someone who can help, or can organize a fundraising event wherever you are in the world,  it would mean so much to me.

You can also donate directly to -
Denise Ryan Lyme Fund
IBAN: IE03BOFI90109589132842

From the bottom of my heart, thank you so much,

Denise x


Note: My previous GoFundMe page was called gofundme.com/10000tenners, which was how I afforded seeing the 2 gastroenterologists in Seattle and my Lyme disease treatment over the past 3 years. So I called this page gofundme.com/10000tenners2!
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Thank you to everyone who has donated to the Fiver Friday so far! It's raised €1,300, so I've another €700 to raise between now and this day next week when I leave for Seattle, to be able to afford my appointments and medications. That's 140 fivers so every fiver is greatly appreciated!

I have to go back to the dressings clinic at the hospital tomorrow, the burns consultant will be there and I have a new rash on the back of my leg where the wound is, it's pretty bad so I really hope he can figure out what's going on because it would be rough to be on a plane for 10 hours with the rash being so hot and itching if we can't get it treated by then! I'm still on the hi-tech antibiotics, they've started making my hair fall out again so I'm also hoping I can at least switch to different antibiotics.

I'll update again before I leave! Thank you so much,

Denise x
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Fiver Friday No. 4 + Update

Hey everyone, I had said that I was going to wait an extra week to do the next Fiver Friday but I couldn't get a refund for my flight to Seattle and have so much to discuss with my doctors, that I've decided to still go on June 15th. I got the MRI results from last Friday, it showed cellulitis and edema. My wound has improved a fair bit in the past week, part of it is still not great and there is still some swelling but it's definitely improving so I'm hoping that in 2 weeks from Sunday when I'm due to leave, it'll be ok enough to get me through the 2 week medical trip to Seattle. The hi-tech antibiotics I'm on for the cellulitis make me so exhausted and give me really bad headaches so I'm also hoping to be able to come off them soon!

I'll be doing the biopsy in August to see if the mark on my stomach is skin cancer. But I can't even think about that right now, I just need to get my leg sorted and get through the trip to Seattle and I will no doubt worry about it all day and night after that.

Because the past 5 weeks of wound care and doctors appointments has been so expensive, I need to raise €2,000 with this Fiver Friday to afford my consultants appointments and medications to bring home from Seattle. I haven't raised that much before with a Fiver Friday and I leave in just over 2 weeks so I'm really worried, if anyone has a fiver to spare this month I greatly appreciate it!

I'll update again before I go, thank you so much,

Denise x
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Last Mini Update for a while -

I was discharged from hospital last night which is great! But I got some very, very unexpected bad news before I left. The consultant I had been waiting to see yesterday was the Dermatologist, who my burns consultant wanted me to see. He wanted her to look at my leg wound and to check this whole body rash that I developed after I was given penicillin last week at the other hospital, because it wasn't going away. But while she was looking at my rash everywhere, she looked at my stomach and noticed this little red skin thing on my stomach that's been there for a few years now. She told me it's probably skin cancer and that I need to have it biopsied. Being told that I probably have skin cancer was not anywhere on the list of things I possibly thought I'd hear when I walked into her room.

In the past 7 weeks I've been: diagnosed as having Hypermobility Spectrum Disorder, spent 2.5 hours in an MRI machine, spent a total of 5 days in hospital, been on 4 different IV antibiotics and prescribed 5 different oral antibiotics including one "hi-tech" antibiotic that's not usually prescribed except in cases of serious bacterial infections which was prescribed by the microbiologist in the second hospital, been to A&E at two different hospitals, been treated horribly by 2 doctors and a bunch of nurses in the first hospital, filed an official complaint about that hospital, gotten a really bad burn on my leg which turned into severe cellulitis and was told I could lose my leg, have done around 50 wound dressing changes, found out I'm allergic to penicillin by getting a rash and having my throat close up, also found out I'm allergic to cephalosporins by getting a rash and having my tongue swell up - which are another mold derived antibiotic family that just 10% of people with a penicillin allergy will be allergic to, had one ultrasound, 6 wound swabs, 7 blood tests, 5 consultant appointments, slept max 3-5 hrs a night, missed my medical trip to Belgium to do the antroduodenal manometry, had to spend almost €2,000 on dressings supplies that aren't covered by insurance or the HSE, still have a rash all over my body that won't go away and have now been told I probably have skin cancer and have to schedule a biopsy as soon as my leg and rash are hopefully a bit better.

I don't know how to deal with the possibility of having skin cancer on top of everything else, especially after what's happened with my leg. I know the next Fiver Friday is supposed to be next week but I'll wait until the Friday after, I'm gonna take a break from social media for a little bit, I'm not okay and I need to I guess figure out a way to cope with everything.

Thank you so much for your support,

Denise x
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Mini Update -

I’ve been in hospital since Tuesday (a different one than the awful hospital last week!), I’m waiting to see another consultant today and for the burns consultant to come back and check my leg while the dressing is being changed, if those things happen I can hopefully go home today but if not I’ll have to be here until at least Monday.

It’s been so terrifying to have had to hear multiple doctors talk this week and last week about the possibility of me losing my leg. The wound got so big (I had to get bigger dressings that are 20cm x 30cm), the infection wouldn’t stop spreading and my leg and foot were so severely swollen that it was headed that way.

Thankfully though the swelling in my leg and foot has gone down a good bit now from getting the right antibiotics, the wound is still bad but that’ll take time, the consultant said it could take a year or more to heal fully. And I’ll have to stay on antibiotics for a while. Today I had an MRI to check how deep the wound is in my leg, I should get the result of that later.

So I definitely won’t be going to Belgium on Sunday to do the test at the hospital there, but hopefully I’ll be able to do it someday if/when my leg is ok enough to travel! I’m mostly just really, really happy and really, really relieved now that I get to keep my leg. The fear of that is such a sick to your stomach feeling and also every time you hear someone say it out loud your heart just stops for a minute.

I’ll update again soon, thank you so much for all your support,

Denise xx
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€31,204 of €150,000 goal

Raised by 883 people in 11 months
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