I am new to this site. I am 45 and was diagnosed around 6 years old. It is a nuisance but we learn to do things a bit differently so it does not stop us from living a normal life. My concern is the link to adult onset Bone Marrow Failure. I saw mention of it in a few articles but that is all. Does anyone have any info to share?

I thought you all might want to see the questions I have written up to ask the RUS Specialist on Thursday. FEEL FREE TO ADD TO THE QUESTIONS. I also have a list of things that I struggle with while having RUS. ALSO FEEL FREE TO ADD TO THIS LIST. Questions --------------- 1. Does RUS tend to have reports of more pain/challenges as one ages? 2. Are there other problems that have been found to be connected to RUS? 3. Has there been any new information/research done on RUS 4. Is there anything that can be done to reduce pain or improve mobility? 5. What caused RUS? Was any part of RUS preventative? 6. Is RUS generic/whats the likelihood that it would be passed down to my future children? 7. About how many people have reported to have RUS, nationwide as well as worldwide? Things struggled with while having RUS ---------------------------------------------------------- -closing doors -holding plates -bowling -holding hands -typing on my phone/using the phone with the hand with RUS -writing -using a fork -cutting meat -lifting weights -moving large objects -using scissors -turning key to start car ignition -pain during weather changes -playing goalie in soccer or in the field in softball/baseball -braiding hair -guitar -drawing

Thank you for sharing. My 9 year old daughter has the same condition. We've never met or heard of anyone who shares this condition. The doctor we finally found at Seattle's Childrens Hospital who was able to diagnose it joked that the only thing she won't be able to do is beg for spare change, but as you note there are other restrictions as well. Add Volleyball to the list of things that are problematic, as is receiving communion in the palm at a Catholic mass.

-Let's see I only can grab at things in order to pickup objects to receive them by hand (that are smaller than my hand), reason being my wrist won't rotate upward due to my lack of arm mobility. Example of this is holding my hand palm up to collect money from a cashier/drive thru. Having someone place something in my hands is impossiable. So grabbing is the only thing I can do. -Other problems I have are... can't touch my shoulders or back with my hands, can't bowl correctly (only granny style), can barely play a guitar while standing up (can play awesomely while laying flat on my lap or a table). Throwing a ball over hand and batting at a ball can be difficult but throwing a ball under hand is impossiable. - basically anything that requires to rotate your arm and hands' palms completely down or up is hard to do or impossible at times. -I recently found out that this is genetic for me because my grandmother told me that my great grandmother had problems with similar issues but I was told by my grandmother that my great grand mother complained about her wrists and how she could not do certain things, so I basically have come to the conclusion that I probably have the same thing that she had. I have searched the web regarding this and was only able to find information on a medical level but was not able to find anything on a personal level on one's experience in having this and what I have is rare but I don't think it should be called a disease it makes it sound bad. So hopefully this is helpful for anybody wanting a personal view on this (I've seen on the internet people asking about this and what to expect regarding their young children but no answers or rarely any comments). Well here it is from someone who has it (and did not have surgery to remedied it) my it is Congenital Radio-ulnar Synopsis. My arms are sideways which I can not rotate them upward what so ever but with limitations to a certain extent can rotate my arms down.

My daughter was recently diagnosed with this disease. I was hoping there might be someone here to help with advice...