The highly positive outlook of so many people who suffer with EGPA and other life changing diseases is quite astounding considering that there are often great physical and mental challenges!
It is easy to dwell on the past and fret about all those things we can no longer do. It's only natural. However we still have those latent interests and talents waiting to emerge and some examples of these are shown below to encourage and inspire you to greater things.
Having EGPA may seem like the end, but we can also make it a new beginning!
I run because I can.
I was determined to post my good news, and give hope to others suffering from this horrible condition. I was diagnosed at age 12 after being ill for 3 long years. This was not a good start to life but finally I got into remission and off of prednisone at the age of 35.
That was a long time and sometimes it felt like I would never get there. Slowly it happened, with the skill of the doctors and my own determination. The past 2 years I worked hard and lost 90lbs and with my new found improvement, felt determined to give back something.
Meanwhile in 1983 an ambitious group of volunteers banded together to form a summer camp unlike any other in Canada. Exclusively serving children with cancer, it would be privately funded, staffed entirely by volunteers and completely free. A camp where every child, no matter how debilitating their illness, would be provided an opportunity to explore enriching, challenging, fun experiences through what is fondly referred to today as the Magic of Ooch.
This was my inspiration and provided the incentive I needed to help with this very deserving cause.
Finally at the age of 41, I completed a 10km run. This is an achievement I am very proud of, since it was made all the more difficult by progressive lung scaring over the years. I hope this can inspire you also to NEVER GIVE UP!
My passions are painting, sailing and my family.
After a lifetime of allergies, including severe reaction to alcohol and being advised by doctors that it was all in my mind, I was eventually diagnosed with EGPA in 2013 in dramatic circumstances.
One day I collapsed and within a few weeks my body started shutting down. Diagnosis came within minutes of my life. This was a week before my daughters wedding for which I arrived in an ambulance!
Thankfully, since then I haven't looked back!
EGPA attacked my Central Nervous System, which is very rare, but most of this is now resolved and my initial devastation at not being able to cope with anything artistic or creative is replaced by the satisfaction and joy of painting at least as well as before, and in new directions.
After overcoming my inability to walk, I taught myself to distance run, which I had not done before, raising over £3000 for a 5km run in the process, though I haven't attempted the 100km walk I always wanted to do, yet!
Sailing seemed way out of reach so we changed our racing dinghy to something simpler which enabled a gradual reintroduction. Fellow competitors are now amazed when we keep winning! Even though I have also taken up mountain biking and kayaking, the best fun I have is with our grandsons, the oldest of whom gave me a reason to stay alive those few years ago
I am a soccer fanatic.
As long as I can remember, I have played soccer, my dream to be an all state player and become a professional. I played in Wyoming, Hawaii and Utah State University for the last two years where I became team Captain. Unfortunately, at this time I was hit by EGPA.
The neuropathy and pain in my legs and feet became uncontrollable and I ended up in a wheelchair. It's hard to explain that feeling, but basically it sucks.
After a few months, I decided to try crutches. They were really hard, but I wanted progress right then. I eventually worked my way to just a cane, which I actually loved. After 6 months I started exercising and running and now have a goal of playing soccer once more.
I know It will be hard and painful, but it's one of the biggest loves in my life. Soccer has taught me so much about myself and other things in life and I want it to continue. I hope this will help give courage to you,whatever your condition, to have both short and long term aims and to go on chasing your dreams.
Martial Arts and Chronic Disease, who would have thought it?
I am a practitioner of the Martial Arts which requires continuous effort to improve skills and develop character. The aim is to strive for self-perfection, a goal that cannot be reached but when you aim for the stars you will still learn how to fly. Although EGPA has limited my participation, I can still assist by focusing on instructing students. Learning 'how to Fight' has equipped me with a skill set I use every day, the most important of which, to me, is compassion.
I have also learned that by being compassionate to myself in adversity, I have a true sense of self. I have grieved the loss of my former healthy life and embrace my 'new normality' by accepting the challenges that lay before me, ensuring life is what I make of it.
My attitude and not my health determines my outlook and I focus on the things I can achieve, making my dreams a reality. Over the last few years I know that I have trained as hard as possible, even managing to achieve Black Belt grading . My next goal is that of achieving an invitation for assessment for my 1st Dan.
Training and encouraging youngsters is hugely fulfilling. Every day I am on this earth brings me something I can be grateful for.
I was diagnosed with EGPA in 2014 after a long period of very bad asthma. I am of more mature years and have led a very active life so I can't complain too much, never-the-less, losing everything overnight was still quite a shock. The biggest impact has been the neuropathy affecting my hands and legs so at the moment I am spending long periods sitting down.
Finding new interests has been challenging but one of the things I have taken the opportunity to do is to express myself through art. I would be hopeless with brushes and paint so 'digital art' is my media of choice. Its easy to correct mistakes, change colours and shading and I am gradually getting better with the software which is 'Procreate' for the ipad.
Been there, got the T shirt.
I would love to be like other 18 year olds, hanging out with friends, going to high school and dating girls. Instead my life is filled with procedures, surgeries and currently well over 20 different medications. Unfortunately, there is no cure so I have to face the hardships in the best way I can and really want to help other EGPA sufferers in the process.
I decided to raise money for research into this terrible disease and to help others to have a place in the hospital where they can be teenagers. I am aiming to raise enough to pay someone to regularly open the teen zone in our local childrens hospital. Teens need a break from the "hospital world".
I have done a walk-a-thon using a treadmill in my hospital room. There is a great buzz about raising money to help others and I have been so impressed by peoples' generosity. Also we have sold T Shirts and always look for other ways to raise money and awareness. I am always thinking about whats next!
Refuse to give in, even though life can often be difficult.
My problems started when I was a baby and had Pink Disease (A rare allergic reaction to Mercury!). This led to a productive cough, hay fever and sinusitis, then In my 30's I became asthmatic. Holding down a job was difficult and I finally had to leave work early, then in 2011 I was diagnosed with EGPA. I was very depressed!
A dear friend found a card making group which I enjoyed as I could work at my own pace. Over time my skills improved and I now design my own cards. I make cards to send to friends and family and also sell a few, which helps with new materials. Making cards has helped me to meet new friends, release my creative skills and restore my dignity.
It takes patience as I have have a severe "familial tremor" as well as EGPA.
Estelles' daughter-in-law Nicole added "We are a very close family and are all super proud of mums' achievements despite the difficult challenges she has had to endure".
Live life without regrets.
I was diagnosed with EGPA in 2007 and although many of my previous hobbies are no longer feasible, I have picked up some new hobbies and interests. I would have never sat still long enough to have done these before EGPA. I started gardening and have all my garden beds made to be waist high so I do not have to bend down to do anything. The new joy I get out of producing food for myself and my family is unmeasurable.
The other surprise is that I started sewing. I make simple square quilts and blankets. I can sit and rest as I cut out fabrics and my short outings to fabric stores gives me the inspiration and a reason to do something other than go to doctor's appointments.
Family and friends are so excited to receive one of my quilts that it makes me feel productive and accomplished.