Dyskeratosis Congentia

Hi Everyone, I am so pleased there is a link to connect all families who are suffering with this sad and devastating condition. My son was diagnosed back in 2011 just by having a routine blood test. Our world fell apart when we finally got the diagnosis that my son along with my daughter have such a rare condition. My son finally had a bone marrow transplant back in 2013 and 5 years on we are still faced with so many challenges. My daughter has not got as many issues as my son at the moment but every year there is something new which comes along we have to deal with. My children's father has recent passed away at the age of 52 which has been a real devastating experience to witness. Through our personal journey we found that due to the fact this condition is so rare not many professionals know enough about this. I find myself trying to justify my actions (due to frustration) on how they disregard your emotional state of mind. The DC Action site for me is the life line that I now have to pass onto these professionals if they required further medical information if they require it. If anyone would like to know more about the journey our family is facing to help with your own please feel free to message me. Thank you all for you time regards

[DC_motheranddaughter Partner]

Hi Bridgetjones. So sorry to hear that your family is affected. We are hoping and expecting that by working together with our health care professionals that things will be better for the next generation. We are working on information sheets for each of the individual parts of the body that can be affected, and a general one for GPs- which will make it easier to get the help we need.