2012 was shaping up to be a hard year….
‘Crying myself blind’
In January my mom was diagnosed with breast cancer and underwent a mastectomy, then started chemotherapy. In February my father-in-law was diagnosed with Thyroid cancer. In March he died. So when I started having blurry vision, I joked that I’d cried myself blind. When that blurriness increased to a weird, ghosted, double vision, that stopped being a joke and I got scared. After going through several doctors, I was finally told I had Keratoconus and not much more. An internet search just increased my anxiety. Why was I getting this “teenager” disease at the age of 40? How fast was this vision loss going to progress? I was a mom of 4 active boys and an artist. How would I survive this? It was a dark time full of dark thoughts. I did a painting to help myself work through my fears.
A peace with KC
After finding better information, doctors who supported me and my medical choices, moving forward with my personal treatment plan, I felt like I’d made my peace with this disease. Still, Keratoconus and all things eye related continued to be a part of my thoughts on an almost daily basis. I decided I wanted to do a series of paintings about eye diseases. This series was inspired by the many amazing people I’ve met online who deal with serious eye conditions every day, the treatments they endure, and the impact all this has on their lives.
The people I’ve met on the internet are wonderful human beings. They are brave and supportive. They are warriors for their eye health, willing to share, listen and be decent. And here’s what they want; they want good eye care, they want doctors who are up on the latest techniques and not stuck in the past, they want people to attempt to understand the challenges they face every day, they want awareness of their diseases and progress towards treatments. While I’ve been kicking around my idea of doing a more comprehensive series of paintings about eyes and eye diseases, the drug company AVEDRO has been trying to get FDA approval for its crosslinking solution in the USA (part of the treatment for Keratoconus) and has been denied. This treatment is the standard of care for the treatment of KC in Europe, and for private doctors in the USA.
Since crosslinking’s success is highly time sensitive, as in, get it as quickly as you can as soon as you find out you have this, I’ve felt so frustrated. It’s given me a kick in the shorts to get word of my series out there. I can’t hasten FDA approval or do much to change the medical community in America, but I can use my art as a way to raise awareness about eye diseases and their impact. Maybe I can grab the attention of one doctor, who has been misdiagnosing KC, or one mom who can’t figure out what is going on with their child’s vision, or one family who is being insensitive about Grandpa’s failing eyesight.
Share your keratoconus story
It’s been harder that I thought it would be to gather source images to work from. Finding people who are willing to be real and share photos of themselves during vulnerable times in their lives is not the easiest task. I have met some great people who’ve been willing to do this and I thank them from the bottom of my heart. Perhaps this post will give others courage to share. If you have a story with photo documentation that you think could be included in my series, please email me at email@example.com
If you know of an eye doctor that might be interested in donating educational materials to help round out the show, or sponsor a painting, please contact me. If you know of a venue that might be interested in showing the works, let me know! This idea is in the beginning stages, and though I plan to continue to add works regardless of outside support, it would be cool if the show could turn into something more than a way for me to express myself. I hope my friends out there in “eye land” can feel my support for them as they battle through the daily challenges that vision problems can bring.
You have a weird, chicken lady artist over here in your corner, rooting for you and painting eyes!
To see more of these eye paintings or check out my other work, please visit my website www.kirstenbeitler.com and my blog http://www.kirstenbeitler.com/my-brush-with-life.php
Kirsten is an artist, wife, teacher, and mother of four boys, gardener, and keeper of chickens, but not necessarily in that order! In her portrait work Kirsten enjoys exploring what makes her subject, whether human, animal or plant, tick; discovering the subjects unique connection to the world around them, both spiritual and physical, and the exposing hidden beauty, sadness, and humour therein.
Kirsten works out of her home in Washington, Utah USA, and owns and runs a small working and teaching studio, The Drawing Room Studio where she offers high quality, affordable, small group lessons, art work and and commissions.
Paintings reproduced by kind permission of Kirsten Beitler. Copywrite Kirsten Beitler 2014- please do not reproduce without permission of the artist.
2 thoughts on “Keratoconus – inspiring art, my story by Kirsten, USA”
I love your paintings–they are reminiscent of Frida Kahlo’s work in how she portrayed her body and she is my absolute favorite.
I also wanted to add that I developed KC in my late 30s and it progressed like mad. I had epi-off CXL bilaterally in CA, but it took nearly a year to get a diagnosis and I saw several doctors like you did. I don’t give these doctors the benefit of the doubt at all and I would still be able to get some correction in 1 eye with glasses if they’d diagnosed me the 1st time I complained about my vision.
In my case, I was already very sick from what I had been told for years was fibromyalgia and developing KC led me to discover that I really had a genetic connective tissue disorder called Ehlers-Danlos syndrome (classical type), which is what caused my KC, as well. I suppose it was a little silver lining…
Also, the last news I got was that Avedro’s NDA had been approved and was being expedited by the FDA with approval of epi-off CXL in 2014 (hopefully). After reading your post, I just found that on 3/18/14 (less than 2 weeks ago!!!), they sent out a press release that they got held up by the FDA. Ugh. Can’t the US just take the studies from the EU and approve CXL so people don’t end up going bankrupt for the pricey trials or put a stop to surgeons charging for a trial they’re already getting paid for? Just a thought. 😉
I look forward to seeing more of your art and thanks for sharing your story,
I’m back because I don’t know how to comment on your blog and apologize for leaving a comment here, but felt it was important. I just wanted to make sure you know that the epi-on CXL you’re planning on getting is not the same as the epi-off CXL going through the FDA trials (backed by Avedro), nor is it the Dresden protocol (epi-off) that is still performed in the E.U. and the rest of the world due to its efficacy. That was developed by Dr. Theo Seiler in Dresden, Germany in 1998 and you can find many articles that he’s published online.
If you are interested in going to L.A. for CXL, I strongly suggest contacting one of the surgeons involved in the FDA-sponsored, epi-off trials or looking for keratoconus specialists in the area online who follow the Dresden protocol for their opinion and facts on the efficacy of epi-on CXL and on getting Intacs at the same time when 2/3 of people get an improvement in visual acuity. You may also be able to find an FDA trial closer to you as the trials in L.A. are extremely expensive. All doctors pad the price; it’s just the nature of the beast so an expensive city will result in a more expensive surgery. FDA trials (following the Dresden protocol) can be found here: http://clinicaltrials.gov/
Best of luck to you…