One of the best tools to help cope with the Fanconi anemia diagnosis is talking to and leaning on others who also live with FA. The private FA Family Support Group on Facebook is a great place to ask questions and get feedback from other parents or adults with FA (learn about joining by emailing info@fanconi.org).
Several questions are directed at the growing adult population, so one adult with FA took on the task of sharing questions from parents and teens with the other adults. Here are some of their responses.
Jack Timperley
Our son is significantly smaller than his same-age peers. We know that this will become more of an issue for him socially as he gets older. Any advice?
The more you accept yourself, the more others will accept you. We smaller folk stand out, but maybe that’s a good thing! Help him see all the benefits there are to his situation. Other kids may not get it, but they don’t have to. Use standing out as an advantage! Get involved in activities, live your own life, and you’ll make true friends along the way!
Where do smaller FA adult guys shop for clothes? Particularly pants with very small waists?
I’ve found H&M to work for me when it comes to pants. Other than that, I wear track/wind pants all the time.
How do we go about telling our child with FA about his condition? As far as we’re concerned, we have a perfectly normal, wonderful child who just happens to require a fair amount of medical care.
You need to do what you think is best for your family dynamic. No one knows your child better than you. You’ll do a great job either way.
Are there others like me (with FA) who are all grown up? What do they do for work?
I’m not just grown up now, I’m also close to being 33 years post bone marrow transplant. I have had some issues along the way, but I have a great life. I have lived out a lot of my dreams and now I have settled down with my wife and my dog. I would never pretend it’s easy to live with FA. But instead of letting it be a hindrance in life, you can use it as fuel to getting things done and enjoy life much more. Right now I work full-time at a nursery. Also, I’m trying to build a small business with a friend of mine where we arrange small eSport/game tournaments and leagues both online and in different locations in Copenhagen. But I have also worked with many other things, from customer service and sales jobs, to being a shop manager and working for years as a game journalist.
When you start dating (or really any new relationship, when is an appropriate time to discuss “I have a rare and life threatening genetic disease”? How do you work that into a conversation?
I didn’t tell her about it all at once. It was definitely gradual. When she offered me drinks in the beginning I would say no because I just don’t like alcohol. But eventually I sat her down and explained to her why alcohol is dangerous for me and that’s why I don’t drink. I didn’t do this when she first offered me a drink because that’s really catching her off guard. I waited until we were having a deeper conversation. If you think your partner is ready, I would take him/her to Camp Sunshine or the Adult Meeting. If the time is not right to go together, share with him/her what the meeting is about and why it is important to you.
As a child transitions into young adulthood, how much of your medical care do you want to handle completely independently? Would you prefer that a parent continues medical management and handles the appointment making, follow ups, and in depth understanding of FA so you can focus on school, relationships and beginning a career?
I would prefer to handle my own medical life. My parents and doctors have all helped me understand the science of FA and the potential implications in the future. I am a very independent person so I pride myself with my ability to take care of myself and run my own life. It’s all about finding that balance. My parents are always there when I need them though.
Do you have a question you’d like to ask the adult FA community? Send it in by emailing info@fanconi.org.
