Misha Walker Advocates For Arthrogryposis Patients One State at a Time

 

Misha Walker and her husband Mike have spent the summer in England, meeting with families who have children with a rare condition called arthrogryposis multiplex congenita (AMC). In the UK more than 360 babies are born with it every year.

Arthrogryposis multiplex congenita (AMC) is a rare condition that causes babies to be born with joint contractures in one or more joints of their body. Their joints may have limited mobility or the joint may be stuck in 1 position. The muscles around the joint may also be thin, weak, stiff, or missing.

Misha Walker is a 34 year old who was also born with AMC. She is unable to lift her left arm, which is shorter than average. Both this year and last year, Misha and her husband took trips around America meeting with 78 different families in 22 states who have children with AMC.

All of the families Misha has met were encouraged by their medical team during pregnancy to terminate the pregnancy once doctors saw the baby had AMC.

AMC has no effect on the learning capabilities of a child.

This is one reason Misha is so adamant about traveling and meeting families. She wants to raise awareness about the independence and happiness that someone born with AMC can experience.

While it took Misha one month after birth to get her AMC diagnosis, her mother had started intuitively stretching her limbs to provide better range of motion for her daughter. Misha lives an independent adult life with her partner now. She has a great social life and an active YouTube and Instagram presence where you may find her posting pictures of her daily activities and adventures- even making toast! For her, being able to bend her elbow to make and eat the toast can be a big deal.

Misha has worked with AMSCI for the past 6 years and has a blog about living with AMC on MishaDreamWalker.com AMSCI is an organization that states its mission as , “providing and encouraging more understanding and mutual support among anyone affected with the diagnosis of arthrogryposis multiplex congenita (AMC), and to create a higher standard of AMC awareness by means of conferences, meetings, and studies.

Recently, Misha has been offered a position as international ambassador within the organization.

Misha met several adults on her trip this year who had never even met anyone with AMC before-they thought they were alone. Misha believes that if the medical community shows greater interest and awareness about patients with AMC this can increase the awareness and support for patients and families.

AMC is not a progressive disease. In fact, if physiotherapy and corrective surgery are done early, children have an excellent potential for having a healthy, long, and rewarding life.

Misha hopes her own adventure-filled life with AMC can help change the perception of life with AMC.

This month in September of 2018, Misha is helping AMCSI host a medical symposium in Philadelphia with nearly 70 doctors. Hopefully this will help connect families with knowledgeable doctors and families will not feel so alone and unsure of what steps to take in the face of an AMC diagnosis. Read the original article here. 


Share this post

Share on facebook
Share on google
Share on twitter
Share on linkedin
Share on pinterest
Share on print
Share on email

What are your thoughts on being a rare disease advocate? Share your stories, thoughts, and hopes with the Patient Worthy community!

Close Menu