Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Radioulnar Synostosis

What is Radioulnar Synostosis?

Radioulnar Synostosis is the abnormal development of the radio-ulnar joint.

 

Radioulnar Synostosis is the abnormal development of the radio-ulnar joint.
Acknowledgement of Radioulnar Synostosis has not been added yet.
Prevalence Information of Radioulnar Synostosis has not been added yet.
Synonyms for Radioulnar Synostosis has not been added yet.
Genetics
Severely restricted supination means that one cannot take change -- the palm cannot be made flat, so the coins fall. It is impossible to touch the shoulders with the thumbs or to hold silverware the way other people do. It is also impossible to play bar chords on a guitar or throw a football properly. Club foot often occurs with this genetic anomaly and sufferers should be checked for heart and kidney problems.
Diagnosis of Radioulnar Synostosis has not been added yet.
Diagnostic tests of Radioulnar Synostosis has not been added yet
Surgical intervention is possible but rarely successful. The bones usually re-fuse and the best that can generally be done is to reset the arms so that when the bones fuse back together the neutral position is more supinated. Blood supply in the arm is often jeopardized by surgery.
See these websites: http://boneandspine.com/pediatric-disorders/congenital-radioulnar-synostosis/ http://www.arbi.org/prevention/conanomi.html http://ehealthforum.com/health/radioulnar-synostosis-t161296.html http://www.righthealth.com/topic/Radioulnar_Synostosis http://rarediseases.info.nih.gov/GARD/Condition/4630/Radioulnar_synostosis_type_1.aspx http://emedicine.medscape.com/article/1240467-overview
Tips or Suggestions of Radioulnar Synostosis has not been added yet.
References of Radioulnar Synostosis has not been added yet.
Does anyone know about the link of this to Bone Marrow Failure? Created by nanoobear12
Last updated 11 Nov 2014, 07:37 PM

Posted by nanoobear12
11 Nov 2014, 07:37 PM

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?

this is me and my views personally Created by sk_smh
Last updated 20 Aug 2014, 03:31 AM

Posted by sophieg534
20 Aug 2014, 03:31 AM

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

Posted by patja
26 May 2014, 04:13 PM

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.

Posted by sk_smh
25 May 2014, 05:38 PM

-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.

Info? Created by dsundby
Last updated 13 Dec 2009, 02:43 AM

Posted by dsundby
13 Dec 2009, 02:43 AM

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

Community External News Link
Title Date Link
Community Resources
Title Description Date Link
Resources on Radioulnar Synostosis

This link provides a clinical description on Radioulnar Synostosis and a number of comments from people who have this syndrome, as I do.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

My name is Ivon Vargas, 24 ...
I have RadioUlnar Synostosi...
I have radial ulna synotosi...
My name is Danielle. This ...
Want to find out more about...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Does anyone know about the link of this to Bone Marrow Failure?

Created by nanoobear12 | Last updated 11 Nov 2014, 07:37 PM

this is me and my views personally

Created by sk_smh | Last updated 20 Aug 2014, 03:31 AM

Info?

Created by dsundby | Last updated 13 Dec 2009, 02:43 AM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.