Welcome! What is Moebius Syndrome?

Hi and welcome to my blog! I hope that you will learn something about this rare disorder called Moebius Syndrome. This blog is to educate and raise awareness! Please feel free to comment on any of my posts with any questions, advice, anything you want me to know or answer!

Moebius Syndrome is the underdevelopment or malformation of the 12 cranial nerves. It can cause a wide variety of things but the most common thing is facial paralysis. It can also cause limb abnormalities, the inability to swallow, hearing loss, vision problems due to the eyes not being able to move properly, etc.

This is my description of it, just from what I know from living with it. There are sites that have much more information and I do encourage everyone to check them out.

The main Moebius Syndrome site is www.moebiussyndrome.com

Another great site which was made and is run by one of my Moebius friends is www.manyfacesofmoebiussyndrome.com. This site has lots of information on events, personal stories of those with Moebius, etc.

Please do check out these sites. Sign my guestbook to let me know what you think of them, of my blog and if you have any questions!

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5 thoughts on “Welcome! What is Moebius Syndrome?

  1. Nice read, I just passed this onto a friend who was doing some research on that. And he actually bought me lunch as I found it for him smile Thus let me rephrase that Thanks for lunch! ggkkedeeaede

  2. Hello, I found you on Twitter on the Rare Disease group. I have POLYCYSTIC Kidney Disease, which is classed as RARE, although 12.1 million people have worldwide. I have had a journey, my Blog is an extension of what I am doing in the real world. I did start one some time ago, but real life giving back then took me on a journey and Iv created a crazy world , where my goal of being on a platform was realised 5 months Into my personal campaign, so next week I am speaking at the NKF conference as a Patient Speaker. I like your words and share your passion for creating awareness. So,let’s support each other please. My BLOG is https://purplechickchallenge.wordpress.com
    Hope to hear from you. TC PC

  3. I have a new baby Grandaughter she’s beautiful but I noticed something wrong immediately many sleepless nights and tears later I am now prepaired for the official diagnosis next week I believe it’s moebius and am ready to cherish and encourage my little cherub so glad I’ve read so many stories of such wonderful people I feel ready to support my Daughter and her Partner and am grateful for the Internet even though I thought myself a dinosaur

  4. Hi from down under
    I have a 13 week old Grandson who was diagnosed with Moebious syndrome about 6 weeks ago. His such a beautiful baby with the most expressive eyes I’ve ever seen. Only his specialist have heard of Moebious so we are all learning about it together. So happy to have come across your blog . Take care

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