Half Marathon for Zondra Meaney
Donation protected
I am running the half marathon in aid of my sister, Zondra Meaney, who suffers from a rare condition known as Ehler-Danlos Syndrome (EDS), for which there is no specialist or treatment available in Ireland. My family, her friends and I are trying to raise money to pay for her to recieve costly treatment in London. While there is no cure for EDS, treatment can lessen the impact of this debilatating condition on her so that she can lead some sort of normal life. To read more about her condition, please read her account below, which she wrote for EDS Awareness Ireland website:
"In July 2013, my life was turned upside down. I was diagnosed with debilitating and progressive illness called Ehlers Danlos Syndrome.
After ten long years of being sick, it was the final missing puzzle piece I had been looking for.
"My symptoms started to be a problem for me about ten years ago. I started to have a lot of back and hip pain, and severe muscle weakness especially in my left arm and leg. I seemed to see every doctor from rheumatologist to neurologists to cardiologists.
One doctor in particular said that his advise was for me to keep pushing myself until I collapsed and was brought to hospital in an ambulance and then they would figure out what it was that was causing my symptoms.
Of course I was not impressed with this but in the end he was right.
Lucky in 2005 I collapsed and was brought to hospital, I was like someone who had a stroke, I could not walk. I lost my speech and my body felt like it was in cement.
I was diagnosed with Myasthenia Gravis, which is an autoimmune disorder which causes severe and life threatening muscle weakness.
I was actually happy to have a diagnosis and I thought it would be the start of my road to recovery.
"But I was wrong; although I had a diagnosis it did not account for my joint pain, my hips that would pop out and the chronic pain I had daily, I never seemed to be getting better and my problems felt like they were getting worse.
In 2007 I gave birth to my son, it wasn't an easy pregnancy to say the least, I was a high risk pregnancy, I had to wear a brace as my pelvic bone separated. I couldn't walk unaided. I could not have a natural birth, but the risk of a c section with my condition was dangerous.
"The night I had my son I was booked in for a c section three weeks before my due date and an emergency team were on twenty four hour call in case the worst happened. It was the scariest and happiest time of my life.
But I never really recovered from the birth, my body felt as if it was shutting down. I spent three weeks in hospital away from my son when he was a few months old which was extremely hard and distressing.
In 2010, I decided to go back to college, but a few weeks in, I noticed I was getting severe headaches that were causing me to black out. I put it down to stress and the change college was putting on my life.
After a night of blacking out my doctor sent me to hospital. This hospital stay I was diagnosed with POTS with is form of Dysautonomia. It can cause black outs. My heart rate was going too fast and my blood pressure was dropping too low. Another diagnosis to deal with and another big life adjustment. But even with these two diagnoses there was no explanation for my 'popping' joints. My hips, shoulders and wrists were dislocating and I was in chronic pain.
When I was diagnosed with Ehlers Danlos Syndrome it was like the doctor finally looked at the overall picture and put the puzzle together. I was told that the POTS and Myasthenia Gravis were being 'caused' by Ehlers Danlos Syndrome. The EDS was causing all my problems for the last ten years and even problems that I had as a child.
The doctor was brutally honest and told me the damage done to my joints now is irreversible, there is no treatment and if I continue to go the way I am I will not be able to walk by the end of college.
Being told I have a progressive illness with no treatment, has knocked me. I am a positive person but there isn't a day I wake up where I can forget I have EDS.
It has effected every aspect of my life and has changed me as a person. I do not tell people I have this illness, I do not tell people how it really feels to have your future taken away from you.
But EDS Awareness Ireland has helped me open up about my condition and talk to other people who understand how devastating EDS really is.
Raising awareness for this condition is so important so that people don't have to go through years without a diagnosis, and also for people's family and friends to gain an understanding of this complex condition and the effect it has on the person they love.
For me and my friends EDS was something we knew about, we lost our friend Amanda Corbett in 2011 to vascular EDS. Anyone that knew her knows the positive attitude she had. Whenever I am having a bad day I think of her strength and determination to fight EDS with the most beautiful smile on her face and i know I will do the same for her and for everyone else with EDS."
"In July 2013, my life was turned upside down. I was diagnosed with debilitating and progressive illness called Ehlers Danlos Syndrome.
After ten long years of being sick, it was the final missing puzzle piece I had been looking for.
"My symptoms started to be a problem for me about ten years ago. I started to have a lot of back and hip pain, and severe muscle weakness especially in my left arm and leg. I seemed to see every doctor from rheumatologist to neurologists to cardiologists.
One doctor in particular said that his advise was for me to keep pushing myself until I collapsed and was brought to hospital in an ambulance and then they would figure out what it was that was causing my symptoms.
Of course I was not impressed with this but in the end he was right.
Lucky in 2005 I collapsed and was brought to hospital, I was like someone who had a stroke, I could not walk. I lost my speech and my body felt like it was in cement.
I was diagnosed with Myasthenia Gravis, which is an autoimmune disorder which causes severe and life threatening muscle weakness.
I was actually happy to have a diagnosis and I thought it would be the start of my road to recovery.
"But I was wrong; although I had a diagnosis it did not account for my joint pain, my hips that would pop out and the chronic pain I had daily, I never seemed to be getting better and my problems felt like they were getting worse.
In 2007 I gave birth to my son, it wasn't an easy pregnancy to say the least, I was a high risk pregnancy, I had to wear a brace as my pelvic bone separated. I couldn't walk unaided. I could not have a natural birth, but the risk of a c section with my condition was dangerous.
"The night I had my son I was booked in for a c section three weeks before my due date and an emergency team were on twenty four hour call in case the worst happened. It was the scariest and happiest time of my life.
But I never really recovered from the birth, my body felt as if it was shutting down. I spent three weeks in hospital away from my son when he was a few months old which was extremely hard and distressing.
In 2010, I decided to go back to college, but a few weeks in, I noticed I was getting severe headaches that were causing me to black out. I put it down to stress and the change college was putting on my life.
After a night of blacking out my doctor sent me to hospital. This hospital stay I was diagnosed with POTS with is form of Dysautonomia. It can cause black outs. My heart rate was going too fast and my blood pressure was dropping too low. Another diagnosis to deal with and another big life adjustment. But even with these two diagnoses there was no explanation for my 'popping' joints. My hips, shoulders and wrists were dislocating and I was in chronic pain.
When I was diagnosed with Ehlers Danlos Syndrome it was like the doctor finally looked at the overall picture and put the puzzle together. I was told that the POTS and Myasthenia Gravis were being 'caused' by Ehlers Danlos Syndrome. The EDS was causing all my problems for the last ten years and even problems that I had as a child.
The doctor was brutally honest and told me the damage done to my joints now is irreversible, there is no treatment and if I continue to go the way I am I will not be able to walk by the end of college.
Being told I have a progressive illness with no treatment, has knocked me. I am a positive person but there isn't a day I wake up where I can forget I have EDS.
It has effected every aspect of my life and has changed me as a person. I do not tell people I have this illness, I do not tell people how it really feels to have your future taken away from you.
But EDS Awareness Ireland has helped me open up about my condition and talk to other people who understand how devastating EDS really is.
Raising awareness for this condition is so important so that people don't have to go through years without a diagnosis, and also for people's family and friends to gain an understanding of this complex condition and the effect it has on the person they love.
For me and my friends EDS was something we knew about, we lost our friend Amanda Corbett in 2011 to vascular EDS. Anyone that knew her knows the positive attitude she had. Whenever I am having a bad day I think of her strength and determination to fight EDS with the most beautiful smile on her face and i know I will do the same for her and for everyone else with EDS."
Organizer
Johnny Meaney
Organizer
Madrid
