Just been diagnosed with Moebius Syndrome or have a child or relative with the condition?
Once you have received a diagnosis it is important to see specialists. Moebius Syndrome affects people in different ways and as such you may need to see a range of specialists.
Your GP or paediatrician may not know much about the condition and as such you may need to do your own research. Often by speaking to other people with this condition you can find who they recommend. Don't be afraid to ask the consultant if they have seen other people with Moebius Syndrome and if not whether they can refer you to a colleague with more experience of the condition.
Some consultants you may need to see include:
- Plastic or reconstructive surgeon
- Maxillofacial surgeon
- Eye Surgeon
- Speech and language therapist
- Speech and language therapist – feeding specialist
- Hand/feet Plastic Surgeon
- Orthopaedic Surgeon
To support those with the condition the Moebius Research Trust are happy to signpost people wherever possible. We can put you in touch with other people in your area or those with similar aspects of the condition. Please contact us if you have any questions.
Our Facebook Page also provides an excellent opportunity for you to communicate with others with the Syndrome and find regular up to date information.
If you would like to help us reach our target of £250,000 to research this condition please visit our Fundraising Page.
If you have any questions please contact us.