Dyskeratosis Congenita Outreach Pacific aims to provide support to DC patients and family members to help them feel less alone with this rare disease and enable people to share stories about their challenges and triumphs.
If you are looking for an understanding and friendly face to speak with about DC, the following people are available to contact with any and all questions you might have.
I’m Michelle, a 36-year-old mother of four from Australia. I am a DC patient and three of my children also have DC. I’d like to reach out to anyone who may feel isolated or overwhelmed, perhaps from diagnosis, or close to diagnosis of yourself or a loved one.
Maybe complications have arisen and you are after a friendly non-judgmental ear who can relate to DC. I understand first hand what an emotional rollercoaster diagnosis can be and the ups and downs of the journey of a life with DC. With DCOP by your side, you’re never alone. You can contact me at email@example.com
In New Zealand
Pam Bayard – Nanny & Hairdresser
Hi my name is Pam Bayard and I have of two sons, both with Dyskeratosis Congenita and another unrelated medical condition called Kartageners Syndrome. My younger son, Aaron, was diagnosed with ITP due to low platelets when he was 10 years old. He went on to develop aplastic anemia and got progressively sicker. His spleen was removed and he had a feeding tube permanently in his stomach. He also had liver surgery. 365 blood transfusions later, still unable to have a bone marrow transplant, tragically Aaron died in February 2011, aged 18.
Unfortunately my oldest son, Tony, who is also a DCOP committee member was diagnosed with DC at the age of 22, not long after Aaron’s death. We reached out for support from the Dyskeratosis Congenita Outreach (DCO) group in the USA, and travelled to their camp in 2012, and again in 2014. I have recently stood down as a member of the DCO board and am now president of DCO Pacific. However, I am still on the American DCO Camp Sunshine committee.
I am happy to talk to anyone that would like to contact me. My email address is firstname.lastname@example.org.
Tony Bayard – Systems Engineer
Hi my name is Tony Bayard. I am 27 years old and happily married, living in Wellington, NZ. I was diagnosed with DC five years ago, a few months after my younger brother passed away after eight years of being very sick with undiagnosed DC. I developed spasticity and avascular necrosis in my hips. I had both hips replaced in 2012 and they have been going well ever since. I have a milder form of DC that mainly affects my lungs; my blood counts are relatively normal and stable. I also have another rare medical condition called Kartagners Syndrome, which I was diagnosed with just after my birth. I graduated in 2012 with a Bachelor of Information Technology and then started working for Weta Digital in 2013 in their IT department. I am happy to talk to anyone who wants to contact me, to be a listener, offer support and advice. I have a blog where I discuss my journey, which can be found at http://www.solvingthepuzzleinboston.org/blog/.
My email address is email@example.com.
In the United States
Hello, my name is Rachel and I have a young son Ronan who has DC. He was born in 2008 and began to show signs of DC in his nails first, at about the age of one. Over the following year he would bruise easily and despite our visits to the doctor, it remained undiagnosed until January 2011, when he had a nosebleed that wouldn’t stop. We were fortunate to have doctors that continued on to find out why he had Aplastic Anemia and found out later that month that it was DC. That was when we came across DC Outreach and learned of Dr. Tolar and his transplant protocol. Ronan had a bone marrow transplant at City of Hope Cancer Research Center in June, 2011 when he was three. He had an unrelated donor, Michael in Germany, who we have now been in touch with. Ronan is doing well and is living a very normal life, going to school, playing sports and dreaming of becoming a world renowned robot.
Ronan has had many experiences along the way including laser eye surgery to help with Revesz Syndrome, and anti-viral treatment post transplant. If you would like to talk about any of this with me, please feel free to contact me anytime at firstname.lastname@example.org, I would love to hear about your experiences, questions and concerns. Anything I can do to help.
Nancy Cornelius– graphic artist
My name is Nancy Cornelius and I was diagnosed about 11 years ago. I am 54 years old and I believe I have a slightly milder form of DC than most people do. I spent many years being shuttled from doctor to doctor receiving all kinds of different diagnoses ranging from idiopathic thrombocytopenia to myelodysplasia. Eventually I ended up at the NIH (the National Institutes of Health) whom I credit with keeping me alive and kicking! I am currently on male androgens which keep my hemoglobin high and my platelets at a stable, albeit low, level. I have been on those since my diagnosis. I had both hips replaced 11 years ago as a result of aseptic necrosis caused by this disease, and I just had them “revised” in Jan, 2011. I have three children; my middle one is 22 and has the disease (see below). My mother passed away from this although we did not know it at the time — she was diagnosed using slides from a post mortem biopsy. I was on the board of DC Outreach, Inc. since its inception and served as president for three years. Although I am no longer on the board, I am still willing to talk to anyone who needs a good listener. My e-mail is email@example.com.
Charlie Cornelius–2012 Villanova Engineering graduate and now pursing a graduate degree at Pratt
Hi! My name is Charlie Cornelius and my mom mentioned me in her profile. I am 23 and am so lucky I found a great job right after graduating but I decided that I wanted something a little more creative so now I am at Pratt in Brooklyn, with any luck, combining my engineeting degree with a degree in Interior Design–not interior decorating! I found out I had DC when I was about 11 years old and it was scary, but so far I have been very lucky and have not had any serious symptoms — mostly graying hair and bad fingernails. As my mother mentioned, we probably have a milder form of the disease. My platelets have dropped a lot in the past few years but they are still close to 100,000. My pulmonary function tests are starting to show some changes. As I said, so far I am lucky but the disease always looms in the background. I would be happy to talk to anyone who wants to talk, but I especially wanted to be a resource for some of the younger DC patients. My e-mail address is firstname.lastname@example.org.