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This is the medical assistance funding page for Colleen Duffy, the musician also known as Devil Doll. This fundraiser launched in January of 2015. The following paragraphs are Colleen's story told in her words.
"Hi there everyone, and to all the Devil Doll fans that I love so madly and that have been so supportive over the years....
I was encouraged to open this page a few years ago, in order to explain to the fans why I have not released any new recordings, why I have stopped touring, why I started listing much of my personal vintage collection for sale... and to allow people an opportunity to help me, instead of trying to carry the burden alone and nearly dropping off the grid. I apologize for all the unanswered emails, FB messages and cancelled tour dates. This fundraiser was originally launched in January of 2015 on GiveForward.com, but then the company forwarded all the pages here to YouCaring. The financial support you see reflects back to that starting point. We were able to transfer all past updates to this page so you can see the progression of the postings.
Over the past 10 years, my health had progressively gotten worse and I have found myself in and out of hospitals all over the country with mystery symptoms, having tests done, blood work, procedures and surgeries, accompanied with long bouts of paralyzing systemic pain in both my muscles and joints. I even had surgery to remove questionable cancerous growth which was not fun. Living in a van on the road became unbearable, as well as trying to simply live in my own body.
There were days when I would be temporarily paralyzed with the feeling of electric volts shooting through my body. I couldn't even move to answer the door and spent a lot of time in bed. My memory had gotten so foggy, that I couldn't remember the day, directions to places, how to play certain instruments, read music or people's names. My body was doing crazy things and no one could figure out what was wrong with me. I had every test done known to man. In July of 2014, I was flown from Los Angeles back home to Cleveland to seek care from one of the most prominent medical communities in the world. I was being rolled into my doctor appointments in a wheelchair. Finally, in November of 2014, I was diagnosed with Ehlers-Danlos Syndome type III. It is a connective tissue disorder that there is no cure for. I had to re-learn how to walk, sit, and stand, along with TONS of physical therapy. I had to wear supportive braces when necessary and use kinesiology tape to hold my joints together. My ribs, shoulders, SI joints, ankles and feet kept coming apart and dislocating. The pain was excruciating. I also had to have several rounds of nerve blocks and botox in my pelvis, just so that I could walk and not be bedridden. I was bedridden for weeks at a time, had to learn how to use a cane and wear special orthotics with my shoes. There was only one pair of shoes that I could wear without wincing in pain and I wore them every single day for 2 straight years, (even in 6 inches of snow,) until they fell apart. I kept gaining weight no matter how healthy, organic, low-carb, high-fat, etc diet I did. Clothing hurt on my skin and I could only tolerate super soft, flowy, stretchy fabrics. Some days, I will change my outfit 2-3 times a day to feel more comfortable because a seam or tag feels like a nail against my skin.
As the testing continued, we discovered that I also had been suffering from lead, mercury, arsenic poisoning as well as mold toxicity that had gone into my brain. Coupled with the aftermath of 15+ concussions, my brain had lost gray matter volume and was compared to the size of someone suffering from Alzheimers. This would explain why I started to forget how to play instruments, read music, people's names, etc. The EDS explained why it became harder and harder for my hands to hold down cords on the guitar or notes on the upright bass. I was diagnosed with POTS, Postural Orthostatic Tachycardia Syndrome, which caused me to live in a constant state of motion sickness unable to walk, read, watch tv or tolerate temperatures above 73 degrees. This went along with my diagnosis of Hypovolemia, (low blood volume), and my Hyperkinetic Heart Syndrome which feels like my heart is going to pound right out of my chest. My autonomic nervous system was fried from all the stress of touring, friends dying, never feeling well and being a survivor of childhood abuse and incest. I was diagnosed with Dysautonomia, which is a dysregulation of the autonomic nervous system. Developmental trauma will fry the nervous system as it is being developed. Now, they have found that trauma, plus the presence of estrogen, can seriously compromise the detoxification pathways in women. This would explain how I seemed to have collected all these heavy metals and mold without dumping them. It can also explain why we see so many women with fibromyalgia and chronic fatigue syndrome, (which I have been diagnosed with as well). It was finally Functional Medicine that was able to connect all the dots for me.
Due to all of your donations, I have been able to seek out such alternative care and resources. We are still connecting the dots on my health problems and how to detox my body as well as how to restore my brain and balance my hormones. I have endometriosis and ovarian cysts and my menstrual cycle has sent me to the hospital more than once. Needless to say, we have more work to do, to get me to a higher functioning level. It has been a big giant game of 'hit and miss' on how to detox, balance and rehabilitate me. All of my treatments, testing and procedures have put me thousands of dollars in debt. It has financially broken me and my family. There is still a journey ahead, requiring expensive detoxification supplement protocols, doctor visits, neurological rehabilitation, physical therapy, PT tools, hormone therapy, iv treatments, etc., and EVERY SINGLE DOLLAR donated helps.
Mold illness kills people and it started to eat away at parts of my brain and nervous system and worsened all of my Ehlers-Danlos symptoms. Thank God we finally figured out what a major role it had been playing.. With your help, I can continue with my doctors to implement detox, balancing, diagnostic and restorative protocols to assist me in my journey to higher functioning and wellness. Getting sick is expensive. Having the support from all of you has been priceless.
As a thank you, I will start recording a new record in February of 2018. You can check my website Devil-Doll.com for the crowdfunding campaign details! You all said you wanted me to get well so that I could give you new music, so here we go! I am not well enough to tour or play live shows, and I am not sure when and if I will be able to play instruments again, but I will be well enough to record in February, thanks to your support.
I am so glad that I did not listen to all the doctors that told me there was no cure, and the best I could do was to learn how to "manage my pain." I kept asking WHAT IS CAUSING ALL THIS UNBEARABLE PAIN? I kept seeking and researching day and night and I'm glad I did.
*** To read more about how I have recovered from POTS, brought my Dysautonomia symptoms to a minimum, and learned how to function daily with minimum pain while having Ehlers-Danlos Syndrome, please read the MY STORY page on my site Devil-Doll.com.