I was born in 1959 in a small farm-town Nebraska, USA. I was a healthy active child and the outdoors was my playground.
From the day I was old enough, I worked; sometimes several jobs at the same time. I went to school and I worked very hard to earn good grades. I was determined to live a better life and education was the first step. I graduated from high school and college with high honors. I am not special: I set goals and work hard to achieve those goals. For the last 13 years, I have taught at California State University, Fullerton. I love my job and I could not imagine doing anything else. To me, the faculty, students, and staff at CSUF are extended family.
I have been married for almost 20 years to a wonderful man. Not only do we have the same interests, morals, and values; we both love to experience new things, people, and places. We both work very hard to earn extra money to explore the world. We are not wealthy: adventure travel, for us, is a priority over things (i.e., new cars, jewelry). After I was diagnosed with Wegener’s Granulomatosis, my husband put everything he wanted to do on hold so I could pursue my quest to climb Mt. Everest. I have the most selfless and supportive husband on the planet.
My daughter is loving, caring, and very giving of herself; a mother could not ask for a better child. Like us, she is also an adventure seeker. In 2008, she took a semester off of college and went to Zimbabwe where, for one month, she was a volunteer at a lion reserve. During my Everest climb she became one of my on-line advocate by helping to keep people inform of my progress.
My journey to Mt. Everest began three years ago but my story, like so many other victims of rare unknown diseases, started more than a decade earlier.
Around 1994, I began to experience a variety of unusual physical problems: loss of vision, fatigue, joint pain, sinus problems, and headaches. For the next 10 years I was subjected to countless medical exams and tests, but the cause of my symptoms remained a mystery. Of the many problems I was experiencing, the one that concerned me the most was my rapidly deteriorating vision. At the rate I was losing sight, I predicted that I would be blind in 6 months. I set aside my other physical problems, and focused on saving my vision. By this time however, I had already seen many eye doctors, none of whom had any idea why I was losing my vision.
In 2004, I found Dr. Gary Holland of the Jules Stein Eye Institute at UCLA. He diagnosed me with retinal vasculitis (inflammation of the blood vessels in the eye). While Dr. Holland could not tell me the cause of the vasculitis, he was able to slow my loss of vision.
On June 8, 2007, I was shopping at a local store when I was overcome with vertigo and nausea. I was having trouble walking. Then I realized I could not see out of one eye. Three days later (because it was the weekend) Dr. Holland told me that I had suffered a central retinal vein occlusion (CRVO). Now I am functionally blind in my left eye. It was the CRVO that lead doctors to the diagnosis of my mystery disease Wegener’s Granulomatosis. I had to give up some of my sight to gain the answer.
Mount Everest: A dream to reality
On August 1st, 2007, I was diagnosed with Wegener’s Granulomatosis and on May 23rd 2010, I summited Mt. Everest. With a rare and potentially life-threatening disease, at the age of 51, and functionally blind in one eye: I joined the elite group of people who have climbed the world’s tallest mountain.
After watching an amazing Discovery Channel show called Everest: Beyond the Limit, I was drawn to climb that mountain: the beauty, the challenge. Please realize that at the time I had climbed only Mt. Kilimanjaro and was no mountaineer. So, at the age of 48, I was going to start training for a new adventure: mountain climbing. Subsequently, I contacted Scott Woolums, a very experience high-altitude guide, and we made arrangements to climb Mt. Aconcagua in Argentina (the highest mountain in South America) for our first training climb.
A few months later is when I experienced CRVO (vascular occlusion), I mentioned earlier, and became functionally blind in my left eye. The CRVO was a clue, Dr. Holland and Dr. Kreiger (Jules Stein Eye Institute) referred me Dr. Gorn a rheumatologist at UCLA Medical Center. On August 1st 2007 I was diagnosed with Limited Wegener's Granulomatosis. As shocking as that was: At least now I knew what I had and began a medication treatment program.
Two weeks later I was admitted to the emergency room having Transient Ischemic Attacks (TIA - mini-strokes). OK, more medical tests and doctors' check-ups: but I keep moving toward the goal of climbing Mt. Everest. The medication(s) to treat WG have serious side-effects and made me ill for many months. But I continued training – I have a mountain to climb.
Four months later, we went to Argentina and climbed Mt. Aconcagua. Unfortunately at 20,000 feet we had to abort our summit attempt due to very high winds. On the way down, around 19,000 feet, I snagged my boot on the other boot, fell, and broke my leg: but I still had to hike 5 hours down to base camp because we were too high for helicopter evacuation. Over the next 7 months I had a couple of surgeries (plate in/plate out) and continued on – I have a mountain to climb.
In the summer of 2009, with my husband, we summited Mt. Rainier, 14, 410 ft; summited Mt. Elbrus, Russia, 18, 513 ft; climbed Peak Lenin, Kyrgyzstan, to 22, 500 ft, we had to abort summit due to team member getting frost bite. During these climbs I learned how to adjust my hiking/climbing techniques to my limited vision.
Currently, I am in remission due to a continuous medication treatment. Fortunately and unfortunately, the medication suppresses my immune system thus putting me at a high risk for infection. If I stop taking the medication, however, the disease can continue to damage my body. Most obviously, the disease is attacking my eyes. While I am functionally blind in one eye, we have (for now) saved my other eye.
I left for Kathmandu on April 2, 2010 for the 60 days it took to prepare for and climb the South Side of Mt. Everest. The fact that I have Wegener's Granulomatosis and functionally blind in one eye does not change my drive to live life to its fullest and that is exactly what I plan to do!
I have many hobbies, such as: SCUBA diving, ballroom dancing, adventure travel, mountain climbing.
As for my ambitions, I want to live life to its fullest no matter what obstacles are placed in front of me and to raise rare disease awareness. I wish to help others through my experiences and to write a book sharing my journey from the unknown, through the disease, the vision loss, and to the top of the world.
I have or will speak at many events related to blindness and vision impairment, such as:
- On-line Chat with Support Group for PAN (non-fit organization)
- International 2010 Vasculitis Foundation Symposium, (non-profit organization)
- California State University, Fullerton WoMen’s Center, (non-profit organization)
- Casa Romantica Cultural Center, (non-profit organization)
I do not use any visual impaired techniques. Both eyes are affected by the retinal vasculitis, so I must wear glasses to read and drive. I must take medication to keep me in remission and hopefully I will not lose more vision. I feel lucky that I have fairly good vision in my right eye. This makes it possible for me to function. Unfortunately; if the disease acts up, called a flare, or if I come out of remission – the first thing that will probably happen is I will lose the rest of my vision.
Technology in the life of blind and visually impaired
The disease I have is attacking the blood vessels in my eyes. The technological advances in medical equipment have allowed my doctors at Jules Stein Eye Institute to monitor my vision and the disease. Without this equipment I may have not been diagnosed and by now could be completely blind or worse.
An Advocate not a Volunteer
As for my voluntary work in the field of blind and visual impaired, I consider myself an advocate not a volunteer. I am on a mission to raise Rare Disease Awareness on an international level. My vision may have been saved if I had been diagnosed sooner. Consequently, I am using the media attention and the Mt. Everest summit to help two organizations by raising awareness and show people that there is hope. For some, climbing a flight of stairs is their Mt. Everest.
Losing the vision in one eye and the subsequent diagnosis of Wegener’s Granulomatosis was just another door I had to walk through as I make my way in this wonderful life. As I continue on my path, I hope to bring awareness to the needs of people with rare diseases.
My favorite quote: “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Author Unknown.
To contact Ms. Cindy Abbott:
Email: cindy@reachingbeyondtheclouds.com
Website: http://reachingbeyondtheclouds.com/
Ms. Abbott recommends you to visit the following websites: