THE iMPACT SURVEY

IOIF is happy to endorse and support the OIFE initiate -The IMPACT SURVEY

The IMPACT Survey is an international research project exploring the real impact OI has on people’s lives. The IMPACT Survey is aimed at capturing and quantifying the true challenges of life with OI to enable better diagnosis, treatment and care, and to support availability of potential future treatments for OI.

#OIStrong : There are no barriers

“There are no barriers in living life the way you want to, it is your choice, all down to the restrictions you put on yourself”

Dr. Neera Ohri

Everyone has a story, let me tell you mine.  I am Dr Neera Ohri, working as an assistant professor in the department of Dentistry at a medical college. I was born in a small town called Kangra, in Himachal Pradesh. I got my very first fracture at the age of 5 years by simply walking and my doctor was surprised. I got my second fracture flying a kite and the doctor plastered my leg but after a month I fractured myself within the plaster. I was 8 years old when I was operated as I had fractured my femur, while dancing on a Punjabi song. There was definitely something wrong with me which nobody could understand. I still remember my parents taking me to CMC  Ludhiana  when I was 9 yrs old, where the doctors told me that I have Osteogenesis  Imperfecta means IMPERFECT BONES by birth. This disease primarily affects bone but it can affect respiratory system,  skin, cardiovascular system, ears, teeth etc.

I was always a bright student. I was going to appear in a scholarship exam with other students. As I was walking, the road was bumpy, I took a jump like other students and broke one hip and the other femur. The hip was so badly broken that it was never repaired even after multiple surgeries and I was bed ridden after that. My friends used to give me their notebooks to cover syllabus, the process continued for a few months but then they stopped coming as I was not able to walk for four years. I used to read all the subjects myself, I was my own teacher except for mathematics for which my parents used to struggle till end to hire a tutor at home. My cousins used to carry me to appear for exams.

Because of disuse, my bones were losing strength. I was given a walker and iron leg braces to walk but those boots were so heavy for me that I fractured in those braces too. One of the doctors said she cannot ever walk. Then, we met a person who was expert in traditional bone setting. He rotated my bone without pain and after two years of extensive physiotherapy, I started walking all over again. During physiotherapy, I fractured three times but by that time my mother had learnt the art of simple fracture reduction.  We did not have orthopedicians and physiotherapists in my town during that time.  So, I was trying different exercises, when my mother was sleeping and broke on bed also (stress fracture).  I did not want to stop for the fear of fractures, and finally after years of practice, one day I started walking without walkers and holding hands.

I cleared my premedical test in the very first attempt and bagged a seat in dental school. My parents were scared to send me away from home but they never stopped me from achieving my dreams. My seniors questioned me how I was going to do dentistry and to go for medical side as dentistry demands physical work.   But as we all know, to be the best you must be able to handle the worst. I proved them all wrong and I cleared dentistry in flying colors. My teachers always appreciated my clinical work.  While I was preparing for masters in Dental surgery, I broke one leg and arm together, even then I cleared All India Entrance Exam and got a seat in the reputed government Dental College and research Institute in Bangalore.  At the same time I had cleared commission exam for government jobs but I chose studies over job.  My parents were scared to send me out of state but I had come a long way and nothing could stop me. I started flying alone, managed my masters far away from my family. My guide was scared after knowing about my condition. She told me to work on a chair next to her, so that she could protect me. Within a month she understood my enthusiasm and my zeal to learn. She gave me a thesis in which I had to work on patients not within my department but instead I had to go and get thalassemia kids from the pediatrics department of Bangalore medical college.

I had lax joints and pain in malunited fracture sites during post-graduation. I had one serious fracture and major surgery two months before my post-graduation final exams.    One of the orthopedicians saw my X-rays and told me that if I had only seen these x-rays and not you, I would have said that this patient does not walk.  I never gave up on myself and my will power led to miracles. Over the years, my pain threshold has become so high that I do not feel pain even if I get a fracture. I am the very first dentist to do Masters in Dental Surgery (Oral Cancer Diagnostician) in differently abled category in my state.

I had a very fulfilling childhood but in retrospect, I know I felt quite Isolated and excluded from normal life.  So, my goal was not to fight against but to live a good life with OI. I think my adult life is not quite affected by OI. I have a profession which I love, I learnt driving at the age of 34 and I have travelled alone to Malaysia, Dubai and Phuket. My plan is to travel as much as possible and try out new things before my body gives up. In India, girls generally are not allowed to do anything alone, forget travelling abroad alone for a girl having OI. The problem with conservative Indian society is that they do not think out of the box. Their definition of normal is fixed, sometimes people stare at me as I am too short to fit in their criteria of normal. There are no barriers in living life the way you want to, it is your choice, all down to the restrictions you put on yourself. Just find your own way to achieve anything on the planet as sky is the limit.

IOIF WISH BONE DAY 2021

WISH BONE DAY 2021 – #OIStrong

JOIN US AS WE CELEBRATE THE INTERNATIONAL DAY OF AWARENESS FOR OSTEOGENESIS IMPERFECTA.
We have two virtual events planned out

Inclusive dance evening at 3pm on 6th may 2021- all children and OI Warriors are welcome to participate because ANY BODY CAN DANCE!!!

An informative session : STEM CELL THERAPY IN OI – an interactive session with Dr.Vrisha Madhuri and interactions with fellow OI warriors from around the globe – at 6pm on 6th May 2021.

JOIN US !!!! #OIStrong

To register contact us on secretary.ioif@gmail.com

Rare diseases day 2021

An awareness walk in Lalbagh Botanical garden, Bengaluru

The last day of February every year is Rare Diseases Day and this year, it was on Sunday, 28th February 2021. IOIF participated in the ORDI’s (Organization for Rare Diseases India) annual event – Race for 7. Race for 7 is a 7 kilometres run or walk aimed at generating awareness among the general public about the 7,000 plus rare diseases. The event features the need for support for patients and their families who are diagnosed with rare diseases. The participants went across the Lalbagh Botanical Gardens, holding banners and speaking to the early morning walkers about rare diseases in general and OI in particular. Many of the enthusiastic participants were those affected by OI. Through events like these, IOIF hopes to raise better awareness which would help in better diagnosis, and treatment of people with rare diseases and especially OI while significantly improving their quality of life.

RARE DISEASE DAY 2021

IOIF will be celebrating the RARE DISEASE DAY on 28th February 2021 by supporting the ORDI initiative RACE FOR 7.

We will be gathering as team IOIF along with OI warriors and supporters of IOIF at Lalbagh on that day to be the voice of people with Osteogenesis imperfecta.

We invite you all to join us for this Run/ Walk , to register along with team IOIF contact Archana Ravindra : 9980761683

JOIN IOIF ON 28TH FEBRUARY 2021 @ LALBAGH

Fragile and Strong

Sahana Rajdev, 50, from Kolkata was diagnosed with OI at the age of 13 while undergoing a treatment for trauma to the eye and multiple fractures with very little injury. Currently she has loss of vision in both eyes due to trauma on very fragile ocular tissue. She is also suffering from Partial loss of hearing in both ears due to OI. She has had numerous fractures in both legs along with scoliosis in dorsal and lumbar spine. At present, she is suffering from severe bone, neuro and muscular pain along with occasional breathlessness.
Inspite of the challenges as described above, Sahana has had a brilliant academic career all throughout till post graduation in Museum Science, where she secured a first position in Kolkata University. Her other hobbies include painting and craft. A sample of her creation is attached for your reference. She has managed an NGO successfully for more than seventeen years. Unfortunately, she had to take a break to undergo rehabilitation for her vision loss.

Sahana is a self-motivated person and her vision loss or OI has never been an impediment through out to achieve something. At an early age of 9, she left the comfort of her home and went to New Delhi, just to study in a better school. She came out with flying colors and ultimately completed her post graduation, inspite of her impediments. After her post graduation, She found an NGO named “ Sarvoday”. The objective of this organization was to provide economic rehabilitation for Disabled. Sahana got immersed herself very deeply in to the activity of the organization and sacrificed her career opportunities completely.

IOIF salutes her courage and commitment despite all her struggles. She is an example of a true unbreakable spirit!!!

PAPER COLLAGE BY SAHANA

AWARENESS MAKES A CHANGE

I am Jasmi from Bangalore and I have Osteogenesis Imperfecta (OI) or the Brittle Bone Disease. I am eighteen years old and I would like to share my story with all of you.

I was born normal and my first fracture occurred at the age of 4 years while I was playing like any other normal child of that age. Initially, my parents thought it was just a fracture and got me treated. However, frequent fractures happening for the slightest reasons got them puzzled and they decided to take me to the Indira Gandhi Institute of Child Health (IGICH). By then I was 9 years old and the Pediatric Orthopedic doctors diagnosed me to have Osteogenesis imperfecta.

Once diagnosed, my parents were unaware about the care that I required. The doctors there educated me and my parents about the special care needed and of course, since then it has been a life full of restrictions. I have experienced about 10 fractures and have undergone rodding surgeries for both my femur bones and tibia on different occasions.

I was fortunate to be accepted in regular school and college. Although school life was fun, I used to sometimes experience dull moments when my teachers would assign responsibilities / activities to my friends that I could not execute. However, I would rid myself off these negative feelings by thinking that I am unique in certain ways than being disabled.  While I was in college, the walking between classrooms used to cause excessive stress on my lower limbs. I began to use a walker and at times I also use the wheel chair.

I love drawing and painting. It helps me relax and gives me a creative power to make things beautiful and have won several prizes in it. I am also a topper in academics and my condition hasn’t deterred my future ambition and aspiration to become an engineer.

I would say I am different, unique rather than disabled. I like to look at the brighter side of life and believe that if you are feeling broken, have hope and trust in God, you will soon come out of that situation. This thought has helped me realize that I can bounce back even after breaking.

In my case awareness was a little late but it did change my perspective. I am here sharing my story with all of you because I wish to support IOIF in its efforts to raise awareness about OI. Awareness makes a change.

THE UNBREAKABLE SPIRIT

My name is Nunna Aravind Kumar, S/o Mr.Samba Siva Rao, native of Machilipatnam town, Krishna district in Andhra Pradesh. I was born on 3rd of January 1990. It was when I reached the age of 5 years that I started to break my bones even with minimum impact. My parents thought something thing was wrong with me and they took me to Nizam Institute Of Medical Science in Hyderabad. I was diagnosed to have Osteogeneis imperfecta. I had inherited this condition from my mother who has OI type-1. Since my parents are from small town, and there were no qualified doctors back in those days to diagnose her condition and it went un-noticed till she turned 30 and everyone assumed that she was just fragile. 

My initial years was a struggle. When I started going to school, children of my age started bullying and started making fun of me due to my bad posture. Also there were issues within the family too and i was an easy target left to defend myself. So much so that facing the school, facing the neighbours and facing my parents became my biggest challenge. As I reached the age of adolescent I started realizing that I was not just a normal kid like others which made me feel inferior and depressed.  

I pushed myself to finish schooling and then joined college. That is when I made a life changing decision which had profound effect on me. I joined a gym to become physically stronger and prove that I am stronger and more capable than what people thought of me. Although I started with some light workouts and lifting small weights, I was making gradual progress until a major accident occurred in 2009 that left me with a fractured leg and made me immobile for six months. However, I did not give up but got back to the gym again with a stronger will and started to train with weights. Eventually, I shifted from training with weights to weight lifting so I could compete in college level competitions with normal people. My own capabilities surprised me as I got the third place in those competitions. I also wanted to explore other forms of fitness so I started swimming and enrolled in Shito Ryu karate classes in which I have achieved the orange belt and have mastered some self-defence moves. 

As this passion grew stronger in me, I developed other interests as well such as Snake conservation. I completed my studies in law with LLB and I am currently working as an Advocate in the Honourable High Court of Andhra Pradesh. My next goal is to participate in the Iron Man competition and I want to motivate people who face different kinds of challenges in their lives.  

As for me, I choose to see the challenges of having OI as an opportunity which has made me understand that I am more than my condition. I thank IOIF for giving me an opportunity to speak of my journey with OI and raise awareness about it. 

Mocking OI on its face:Living an independent dignified life

Indian Osteogenesis Imperfecta Foundation (IOIF) had an opportunity to interview Sirisha, a person with Osteogenesis Imperfecta. In an hour-long conversation with Sirisha, we got to know about her life and its finer details and how despite all odds she continues to work independently in Bangalore away from her parents and homely care. This post attempts to capture the eventful life of Sirisha and intends to spread the message to families and people alike that the greatest truth of life is our inner strength in front of which every seeming incapacity crumbles and surrenders.

Sirisha

Sirisha was born in Chittoor town district in Andhra Pradesh in the year 1988. The medical staff was not aware of OI and handled her as they would handle any infant born without OI. During birth she experienced multiple fractures in several parts of her body. However, a recognition of underlying cause could not be made and Sirisha was continuously writhing in pain. Observing these incidents, the doctor advised to take the baby to an orthopaedic doctor. Within 30 minutes, as the orthopedic doctor checked her, Sirisha was diagnosed with Osteogenesis Imperfecta. With the hope to find a cure for their daughter, Sirisha’s parents took her to several hospitals like NIMS Hyderabad, Vijayawada orthopaedic center and AIIMS. The diagnosis, however remained the same and was confirmed by all the doctors. By this time the family had understood that there was no cure for the condition.

Growing up she was home-schooled till 7th class mostly by her mother. It was in her 7th class that she went to school for the first time to write exams. She eventually succeeded in writing her 10th class exams but after that there were some challenges in getting admission to pre-university. After concerted efforts from her family and with the support from school management she was able to get permission to appear in exams and continued to be homeschooled. She had opted for Commerce stream. She enrolled in BCom(computers) and successfully finished it. Post graduation she enrolled for an MBA and simultaneously she was also preparing for some competitive exams. Eventually, she joined a private firm as a data entry operator and handled multiple responsibilities including that of customer care executive, quality analyst person and also a mentor to people with special abilities at the workplace. She worked there for 3.5 years and currently she is working in a foreign bank.

Sirisha with her parents

The biggest decision Sirisha took was to move out of her hometown and come to Bangalore. Her father was a big force behind this decision. She clearly remembers what he had said, “Now that you are a grown up adult, you need to learn to take care of yourself”. It would not have been easy for him to say that to Sirisha, he knew the challenges involved, yet he encouraged his daughter to explore and experiment with life in her own personal ways. Additionally, the motivation behind this decision she says was also to prove herself and to provide a peaceful response to those people who had objected to her education while growing up. Sirisha mentions that she had to hear statements like – “What is the point of writing exams? She has to be carried all the way to the school. What is the use of education to her?” and much more. Who would have thought that this girl would be using all these doubts to cultivate inner strength and moulding a dream? With exemplary demonstration of positive rebel attitude Sirisha has managed to turn those anxious about her life and future into her admirers.  Obviously it was not as easy it sounds on reading; growing up and embracing her condition involved momentous efforts and an attitude change. Imagine a girl with OI coming to Bangalore on her own and setting up a comfortable dwelling. She currently lives in a paying guest accomodation with the help of a caretaker.

Sirisha also mentioned about her colleagues in office, especially the MD, who have been very cooperative and supportive. She also learnt Kannada to mingle with the employees and the Bangalore community.  We asked Sirisha what her message is to the parents of kids with OI after experiencing the way her parents brought her up. She says,

“Why do you think the child has a critical condition? The child needs little bit extra care and the responsibility ought to be to nurture the child such that he/she can live independently at any cost. In that respect, education of child plays an important role. See that you are making your child fiercely independent”.

Sirisha is also a National Awardee in the Best Employment category.

IOIF thanks Sirisha for sharing her valuable time with us and letting us know about her life. Sirisha’s life is a testimony to the fact that OI does not have to stop anyone from becoming a useful asset to the society and lead a life of financial independence and social dignity. IOIF is also immensely proud of Sirisha’s parents.

“My bones break but they do not break me.”–Dhanya Ravi

Indian Osteogenesis Imperfecta Foundation (IOIF) visited Dhanya Ravi at her Jeevan Bima Nagar home as part of the foundation’s endeavor to gather stories of people winning over Osteogenesis Imperfecta (OI) and spread awareness about it in the community.

Dhanya Ravi is a global name, she is a motivational speaker, a flamboyant woman and an innocent child at heart. Dhanya has a purpose in life, a purpose to create traction and awareness about OI and spares no moment to work towards it. Like a hero she has tackled all the hurdles in her life and acquired a calm demeanor tantamount to that of a wise saint. This article is the story of Dhanya Ravi.

Dhanya was born with a femur bone fracture. The swelling took few days to appear. The fracture was diagnosed but OI was not. Her constant and unending cries owing to the pain would not subside and this caused her parents much anxiety. At that time, due to the lack of technologies and inexperience of doctors regarding OI, it was challenging to diagnose it. It would take another week and multiple consultations with doctors to figure out that Dhanya was born with a rare disease – Osteogenesis Imperfecta. “From then on”, she says, “it was a journey to many doctors for her parents to understand more about the condition and to investigate about future steps”. It was finally at Christian Medical College (CMC), Vellore that they met a doctor who not only explained to them about the condition but also encouraged them to accept the truth and motivated them to do the best as parents for Dhanya. One more thing that differentiated this doctor from the rest was his empathy and sense of connectedness with Dhanya’s parents during their extremely emotionally vulnerable and psychologically troublesome time. It was the guidance and counselling they had received from the doctor that helped them move forward, embrace the situation and prepare selves for the challenges to come. Dhanya emphasizes that every doctor must be trained to handle such situation(s) so that the parents find it less difficult to accept it and gain a perspective on nurturing the child.

Since OI causes multiple and recurrent fractures, Dhanya’s parents had to take her to hospital quite often. During one such incidence, while coming back from the hospital, Dhanya had another fracture. After that Dhanya’s father was advised by doctors to restrict the travel and movement. Eventually, Dhanya’s doting father also learnt how to fix a fracture. Rodding as an option that time in Dhanya’s case was slightly unclear. There was lots of confusion and lack of clarity. She says, “Either the doctors were not clear, or my parents did not know or my health was not allowing the surgery”. In times like these, it is not easy to arrive at a decision regarding surgery or operation. Lack of knowledge and research in this domain can be held accountable. 27 years down the line, however, times have changed states Dhanya. She elaborates:

“Nowadays there is relatively a greater awareness about rodding, doctors are more confident because technology has evolved considerably. Rodding is increasingly practiced in infants now.”

At this point she emphasizes that she is not regretful but concerned about the way in which the diagnosis of OI is handled both by doctors and the parents. She says that research ought to be done by both the parties after diagnosis as to how to address it. Quite emphatically she also asserts that the upbringing of the child ought to be focused on making him/her empowered and independent while maintaining a careful balance between care and excessive care.

Although it must have been difficult for Dhanya to come to terms with her own condition growing up, she declares that embracing OI was not tough. She had surrendered and accepted it not with regrets but immense gratitude. Dhanya could not receive formal education for schools were skeptical about her health and safety during the premises. However, there was one humble woman, Victoria, who would home-school Dhanya for ten years, absolutely free of cost. For those who have not heard Dhanya, she speaks an impeccable English. (By writing this we do not imply that English speaking ability proves education or an inability hints at the lack of it) Dhanya attributes her fluency and hold over English language entirely to Victoria.

“But more importantly”, she says, “that it was parents’ support and optimism about life that has influenced me the most”.

Victoria taught Dhanya to read, write and learn and one of Dhanya’s friends shared curriculum books with her. This is how learning blossomed for her. As Dhanya grew up, computer and books became her friends. No wonder Dhanya is a wonderful writer, does content writing as a freelancer. She also maintains a blog and an online space on YourQuote titled, “Matter of Thought”. It was blogging which led her to explore more about the world of internet before venturing into Data Entry work.

She says that even though the money was less but it was not about money, it was about the feeling of being engaged and contributing towards the society in her own unique ways.

For a long time, Dhanya was also associated with Amrithavarshini Charitable Society for Osteogenesis Imperfecta after coming in contact with Latha Nair, the founder of the organization. The story of this connection goes back to Dhanya’s encounter with Binu Devassya, a young kid with OI, who needed money for his medical surgery. She had read about Binu in the newspaper. The news was advertised by Binu’s supporters. Dhanya introduced her group of networking friends with whom she was associated during that time to Latha Nair with the intention to help Binu. This act of self-less care and empathy led Dhanya and Latha to cross each other’s paths. Mysterious that Dhanya is, all this while, it was not known to Latha that Dhanya also had OI. She says,

“Amrithavarshini is like a learning institution for me where I was able to connect with people of a similar health condition, Beyond a positive socialisation it helped me learn from each others’ experiences.”

This is just one of the many acts by Dhanya from which we can learn the meaning of true selfless service. With Amrithavarshini, Dhanya began creating awareness about OI through public speaking, news shows and TV interviews. Currently she is active in mobilization and sensitization for OI and rare diseases individually and in collaboration with different non-profit organizations (NGOs). In her words:

“Creating awareness about OI and rare diseases, that is my goal and vision in life”.

She dreams of an inclusive India, “being together” she says. Talking of creating awareness about OI, Dhanya has also been a speaker at TED, interviewed by International newspapers and covered in magazines. Her purpose has brought her to meet Late. Shri A.P.J Abdul Kalam about whom she speaks with genuine respectful admiration. Recently, she also met Sadhguru Jaggi Vasudev at IIM Bangalore and requested him to spread awareness about OI and rare diseases. The video conversation of Youthandtruth is published on youtube .
Dhanya has also mentioned about this meeting on her blog here.

On a serious note Dhanya mentions that since OI is a genetic disorder, it is critical that the couple get tested before planning childbirth and that the mother is also tested mandatorily in the early phases of pregnancy. (We want to inform our readers that genetic examination is affordable.) She also states that over the period of time she has learnt to handle fractures herself and the accompanying pain without being overly dependent on painkillers. Obviously this means that her mental strength has soared high.

We asked Dhanya about her message to the world, particularly for youth, in such tumultuous times where stress and depression is becoming so pervasive. She articulated it very beautifully and said,

“My bones break but they do not break me. Life is all about challenges, struggles, cries but never forget your purpose. My times can be bad, or good or even horrible but I never let the purpose of my life go out of sight. There are a million things one can do, everyone has a unique contribution to make to the society. Life is such a precious gift, never give up on life. Sometimes just hug yourself and say, ‘Its okay’.”

This statement is immensely powerful and a good reminder of the fortitude that all of us possess naturally due to the Grace of Lord. Lastly, Dhanya concluded the interview by saying:

“I do not wish another generation to be born with a condition like this, that is the whole point behind my being. My purpose is to create awareness and traction about OI so that it can be prevented and appropriately handled. My vision is that if a child is born with rare disease, practical steps are taken to ensure that life is smooth for both the child and the parents. In this respect, doctors have a huge role to play. They have to become physicians, counsellors and advisors at the same time to provide courage and support to parents on diagnosis of the disorder.”

The foundation immensely thanks Dhanya Ravi for taking out time to talk to us and share her phenomenal life with us. Dhanya Ravi is a force to reckon with. She is not only a flag-bearer of the movement to create awareness about OI and rare diseases but also a light that guides us all to live a life of selfless service.

The foundation also deeply praises Dhanya Ravi’s parents for forever holding her hand, setting an example for the entire world and making all of us believe that:

“Happiness can be found even in the darkest of times, if one only remembers to turn on the light.”
― Harry Potter and the Prisoner of Azkaban

Acknowledging Dhanya’s relentless efforts to create traction about OI and rare diseases, the Ministry of Social Justice and Empowerment, Government of India has conferred National Award for Empowerment of People with Disability – under the category ‘Role Model on Dhanya Ravi very recently. The foundation congratulates Dhanya and her family and wishes her all the best for her future endeavors.