August 8, 2018

ORAKWUE: Pain, gain, fun of living with incurable disorder

ORAKWUE: Pain, gain, fun of living with incurable disorder

Uzoamaka Orakwue

 By Charles Kumolu

WITH a Bachelor’s degree in Law and a Master’s degree in Oil & Gas Law and Legislative Drafting from the University of Aberdeen, Scotland, Uzoamaka Orakwue,  Chairman Executive Officer, CEO, Strugz-Safe Havens has been recording accomplishments in life and business. Beneath the glitz of her success, are pains, struggles and commitment to saving lives motivated  by her condition as a Myasthenia Gravis ,MG, patient. MG is a neuromuscular disorder that causes weakness in the skeletal muscles, which are the muscles the body uses for movement. To assist people living with MG which has no cure, Orakuwue established the Tener Cansado Foundation. This is her story.

Uzoamaka Orakwue

 Fond memories

My childhood was filled with so much fun and good memories. I was a very inquisitive child and  encouraged by my parents to always ask questions and be vocal about my opinions. I grew up in a family of six comprising  my parents and four siblings but our extended family and  friends lived with us. It was more of growing up in a very large family where we all lived in harmony and unity. I was taught how to love and respect people. I always had a closely-knit group of friends in school. My parents were strict but  I was free to explore my potentials. I was very active in school especially in my drama class and  performed  exceptionally well in English language. I  loved staying in my  room reading  romance novels I could lay my hands on.

Optimistic about life

I grew up with such an optimistic disposition to life and without being  judgmental.  I’m really  lucky to have had a normal, comfortable, stable and fun-filled childhood. I’m thankful to God and my parents. I am from Onitsha in Anambra State. I live and work in Lagos State. I am a legal and business consultant as well  as  a Public Relations expert  and Real Life Issues Coach. I am the Founder/CEO of STRUGZ Safe Havens, a partner with CUR Advisory Limited. Recently, I incorporated    Tener Cansado Foundation which  assists persons living with myasthenia gravis and other auto-immune related diseases. I love educating myself and by God’s grace, I have acquired a lot of skills  in different fields. I am versatile and result-driven and  with strong entrepreneurial skills.

My life and business

I regard myself as  a woman of excellence, because I try to achieve excellence in whatever I do. Perfection is my credo in anything I do. That’s why I’m driven by the desire to make the best out of any situation and task. Sometimes, my friend  teases me by saying  I have the strength for everything.  I’m enthusiastic about learning.  Being around people who share my  values has helped me to achieve personal and professional growth.  For me, networking is an essential part of living. It’s basically a huge part of my life and business. I’m  motivated by my ambitions and  knowing that my thoughts and words are so powerful to birth my heart’s desires, has brought me far in life.

My turning point

When I was diagnosed with myasthenia gravis, it was a major turning point in my life. It’s a neuromuscular disorder that causes weakness in the skeletal muscles, which are  essential for movement. It occurs when communication between nerve cells and muscles is impaired.There’s no cure for myasthenia gravis, but treatment can help relieve  symptoms like  weakness of arm or leg muscles, double vision, drooping eyelids,  speech impairment and enhance  chewing, swallowing and breathing. Myasthenia gravis is more common in women younger than 40 and in men older than 60. I realised that in a split second, my whole life changed.  From that moment, I started seeing life differently and I live every day like my last. That experience is enough for anyone to realise that it’s important to live a purposeful  life . That’s why I’m committed to touching people’s lives positively and to make an impact in the world. I was motivated to launch this foundation because of my  struggles with myasthenia gravis  as my medication and  consultation with  the neurologist are expensive. I thought of people who would not be able to afford their medication or consultations with  a neurologist. So, I decided to start a campaign to educate people about myasthenia gravis, fund research to find a cure and encourage patients about  living their  lives to the fullest  despite their challenges and weakness. Information is power and the will to win has helped me a lot. That is why I am sharing my winning strategies.

My struggles with myasthenia gravis

Myasthenia gravis, unfortunately, has no cure and the whole experience so far has been quite energy-sapping, because it targets the muscles and affects your daily life. I have had some crises that resulted in  hospitalization. I underwent a major surgery this year called thymectomy to take out my swollen thymus gland and the experience was horrifying. In all, I’m thankful to God and I continue to keep the faith despite my condition. I am very empathetic to those going through the same experiences. That’s why I’m very passionate about  Tener Cansado Foundation which is focused on patients  with myasthenia gravis and other auto-immune related conditions.

Accomplishments in life

I have several notable accomplishments in my career and business. Probably, the most notable accomplishment in my career was being part of the team that drafted and delivered  the Physical Planning and Development Law 2015 for Bayelsa State Government. The project gave me an opportunity and  platform to actually utilise my expertise in Legislative Drafting and hone my research skills. In my business, consolidating  my  client’s  market share has been  really rewarding as well my ability to diversify  STRUGZ . Thanks to God Almighty, we’re evolving. I’m excited about the future and can’t wait to tell the world about our new project that we’ll be launching very soon. I find it fulfilling that I have been involved in creating opportunities for people, including the less- privileged.

 Balance between my primary job and others

I love multi-tasking. Venturing into many opportunities makes my career more fun and challenging. I’m super-excited about our new project, Beyond Beauty Pageant, BPP, which is focused on empowering women with skill sets  to enable  them  have more negotiating power and bring more to the table as business/career women. It’s not the regular beauty pageant that’s focused on talents. BBP is focused on skill sets and creates a wider age bracket for enterprising women between the 21-40years age bracket.

However, I create a balance by drawing up strategies and objectives for each project. I also set achievable goals and targets. Fundamentally, I have an amazing team and it makes juggling quite easy.

Cherished values

I am  very loyal and I believe in lasting relationships. I am also a solution provider for  clients and people I come in contact with. I am your “Go to girl”  whenever people find themselves in a crisis. My ability and knack to infuse positive energy and clear insights into a crisis is remarkable. I am a perfectionist and most times, I find myself delegating less, because I believe nobody can satiate my standards. I’m learning to delegate more and trust the abilities of others with the understanding that I can’t do it all and that it’s okay to ask for help sometimes.

 My goals

I intend to improve the performance of the criminal justice system in Nigeria by ensuring that defendants do not have to spend too much time awaiting trial. Also, procedural documents must wherever possible be made available in digital form to lawyers and the public. I also intend to create and introduce a new system where women can obtain formal and legal education on divorce and settlement options.