An exclusive chat with the "inspirational" Neeru Sharma, Board Member of the OI Foundation
Life is filled with complexities and adults get
challenged at various times with several personal, work and health related
problems. We have been granted one life span of over 60 working years, where, as
an adult we can choose and live life with values that have been entrusted by our
culture, upbringing and experience.
We have just one chance – to make it, live it or break it and extinguish it. It is indeed a matter of pure grit and determination, that as an individual, you oversee the limitations and challenges by focusing more on making a success out of what you have and what you do. Someone close to me once said that no matter what you are - a trucker, a doctor or an entrepreneur – be the best in that profession. One such beautiful example of our Michigan Indian community is Neeru Sharma.
Anu Gopalakrishnan speaks with Neeru Sharma to showcase to the community that we are all instruments of god and we are here for a purpose – to make a difference either to a friend, family member, organization, or for one’s own soul! Neeru Sharma is affected by Osteogenesis Imperfecta, a rare bone disease. Neeru is also the Board Member of the OI Foundation. Some excerpts from the interview:
In common layman terms, what is OI?
Osteogenesis Imperfecta causes brittle bones which break very easily. A cough or sneeze can break a rib, and rolling over can break a leg. Throughout his or her lifetime, a person with OI will have numerous or even hundreds of broken bones. People with OI vary in physical size, and there is a wide variation in severity. They may also experience early hearing loss, spinal curvature, brittle teeth, and respiratory problems. There is no cure at this time. OI, which affects an estimated 20,000 - 50,000 people in the United States, People with OI are completely normal intellectually, mentally, and emotionally.
What is the OI Foundation all about?
People with OI can succeed in school and the workplace, develop satisfying social and family relationships and live independently. To pursue these goals, they face many challenges – limited mobility, physical pain, societal prejudice, and architectural barriers. The OI Foundation helps people with OI face the challenges of coping with OI so that they can lead satisfying and successful lives. The Foundation's mission is to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness, and mutual support. Today, many of the people who serve on the board of directors and oversee the Foundation's operation have OI themselves or are parents of children with OI.
How are you involved with this foundation?
I am on the board of directors and have served 5 out of my 6 year term. I also have OI and can relate to challenges our foundation works to solve.
What are the treatment options? How many are estimated to be suffering from OI?
Treatment is based on maintaining overall health including physical therapy. Fracture management is using casts/braces/splints to help heal bones. Vitamins and some drugs shown to improve bone density also are used. Finally most people with OI will undergo surgery to correct broken bones or help in improving mobility when necessary. Wheelchairs and walkers are used for those with more severe cases.
What are the other issues faced by individuals suffering from OI apart from physical immobility?
Hearing loss, brittle teeth and scolosis are common symptoms. Breathing issues also may occur due to the scolosis. People with OI use wheelchairs/walkers to overcome mobility challenges.
Tell us about yourself and how you cope with this challenge everyday?
I am 36 years old and work for General Motors in our Global Program Management department in our business process group. I have completed my MBA from Oakland University and BS from Kettering University. I use an electric wheelchair and specially adapted minivan for mobility and I am only 3 feet tall. However I drive my van, live in my condo and live life quite normally. My family and friends help when needed and I have traveled the world. My parents and brother are very supportive and we are a close knit family. I do not think a medical condition makes me much different from anyone else. Everyone in life has challenges – the key is being mature enough to handle them. You may not be able to choose your circumstances but if you work hard, stay positive, and develop yourself socially and intellectually you can achieve your goals.
Neeru Sharma, a member of the OI Foundation Board of Directors, works for GM Mobility, helping to make driving an accessible activity for all persons with disabilities
What is the objective behind the fundraiser?
The fundraiser serves to raise money for medical research. The OI Foundation provides grants of money to doctors and researchers who are working on clinical trials related to drug therapies which are used to reduce fractures. Medical research also funds the OI Registry and the Linked Clinical Research Centers.
How has the response been from the Indian community to such a cause?
Not very good – few people have inquired about the event. The Indian community needs to realize that this is a fun filled event and as Indians this is their chance to give back to the community. General Motors is our corporate sponsor.
The Indian community needs to be more open minded toward people with disabilities and realize we are people like everyone else. We have the same abilities and desires and should not be treated like children or second class citizens. We deserve the same respect and opportunities given to everyone else.
From your side, what kind of expectations do you have from the “Unbreakable Spirit” fundraiser?
We hope to raise thousands of dollars for medical research and I am hoping at least 200 people to attend. You can buy tickets at www.oif.org/MIDinner
We have all been molded by one creator – with life, soul and energy. It is true that problems arise out of various situations. But to face them and overcome them requires mighty grit and a solid positive attitude without compromising your core values. Lack of awareness and lack of funding with very little from the government has literally been the cause behind the ignorance of OI among a lot of us. This attitude can be changed by all of us as a community!
There are several individuals – children and adults who are like Neeru. True to the theme of the event, they may be physically broken but the spirit is so unbreakable. The OI Foundation and Miindia.com strongly urges the community, voluntary organizations and medical practitioners to come forward and provide support in terms of monetary aspects towards the funding of OI medical research.
The “Unbreakable Spirit” dinner, sponsored by General Motors will comprise of a Silent Auction, a comedy hypnotist and a musical gig (live rock band) by Detroit’s very own Space Nelson. Dinner will also be served. Visit https://www.oif.org/ for more information. For the first OI “Unbreakable Spirit” fundraiser, click here.
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