"No disability or dictionary out there, is capable of clearly defining
who we are as a person."
Robert M Hensel
It’s Never Late to Learn, I always admire this quote which keeps my hunger to learn new things in life. Learning can be any information or can be about yourself. Me and my twin sister are born with a congenital facial paralysis It is a rare congenital neurological condition which primarily affects the muscles that controls the facial expressions and complete eye closure. It is considered as one of the Rare Disorders (RD) basically there are more than 7000 RDs observed in the world. Recently, I found out that this condition nearly matches with a RD called Moebius Syndrome (MS), but we do not fall under that as we do not meet all the criteria which defines the Syndrome, so it is still considered as congenital facial paralysis.
Out of curiosity, I contacted Dr. Kathleen Boghart who is a successful academician and TEDx Speaker, Health Psychology professor and who is also part of the Moebius Syndrome Foundation (MSF) and Ms. Vicki McCarrell Co-founder of the MSF to learn about the syndrome and the foundation. They welcomed me into the MSF family and accepted my interest to volunteer with them in future. I want to create awareness and provide above all emotional and psychological support to the affected individuals and families in India and abroad. I was surprised to learn that there are 4-5 people excluding us in India who are affected with this kind of RDs.
What do MSF do ?
The mission of
the Moebius Syndrome Foundation is to provide information and support to
individuals with Moebius syndrome and their families, promote greater awareness
and understanding of Moebius syndrome, and to advocate for scientific research
to advance the diagnosis and treatment of Moebius syndrome and its associated
conditions.
https://moebiussyndrome.org/who-we-are/mission-and-history/
Fortunately, we were blessed to born in a family where we were surrounded with a lovely and caring parents, siblings, family, and friends who never let us feel that we were different from others. This is one of the reasons I never took interest to learn about this RD in depth in these many years. Despite this abundant love, we faced a lot of issues in our childhood, in school, and college. If not all few strangers or any one at the first meet as many do not know how to react or do not know what it is? Always that strange look given by some people hurts because they are uneducated and impossible to explain them what it is and they are surprised if this kind of RD exists.
Some showed empathy and others sympathy. We both also faced the major difficulty during our jobs and marriage. Coming from an Indian society where most of the marriages were/are arranged my parents faced lot of issues to find us a life partner who can understand about this RD and can accept us the way we are. Many rejected and some were ready to marry only if we agree to pay huge dowry for which I never agreed.
My father who was my strong pillar, my mentor and he always motivated
us to be financially independent and that has made me a strong independent
woman who is not ready to give up her choices and freedom just for the sake of
marriage. My sister got married and have 2 beautiful daughters who are the
proof that this RD is not genetical and it may or may not pass to next
generation.
I am not sure if any serious research or diagnosis is done in India or maybe I am not aware of it. After learning about MSF in USA, I am happy to be part of their research & want to work closely with them to spread awareness and support people by sharing my experiences.
I want to advocate the individuals with any kind of disability especially women in India who are shy and afraid to stand for themselves or worried about being defamed. Raise your voice, love yourself and stand for yourself rest will fall in place.
Believe in yourself.
Stay safe
Madhuri
