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HOLA LA HISTORIA ES DE MI BEBE SAMUEL UN NIÑO CON TANTA ALEGRIA QUE ES LA FUERZA QUE ME DA PARA SEGUIR ADELANTE Y NO DERRUMBARME CUANDO LO VEO SUFRIR, LA VIDA NO ES FACIL PERO NOS PONE A ESTOS ANGELITOS QUE EL SOLO VER SUS CANAS DE VIVIR NOS DA ESA FUERZA QUE CONFIANDO SOLO JEHOVA PUEDE DAR. EL TIENE TRES AÑOS LA HEMOFILIA ES SEVERA Y YA VA PARA DOS AÑOS CON INHIBIDORES DE ALTA RESPUESTA, PERO ADELANTE CONFIANDO EN JEHOVA QUE SALGA PRONTO DE ESE CUADRO Y PUEDA RECIBIR SU TRATAMIENTO. A LOS PADRES FUERZA Y ESPERANZA

My name is Evelyn Grimberg from the Netherlands and I’m 30 years old. I have the rare bleeding disorder Glanzmann’s Thrombastenia. I have been diagnosed with 4 months. Just as many people with a bleeding disorder I have to deal with nose bleeds, bleeds of the gum, heavily bruising and problems with having my period.
Especially during my puberty I have had a lot of problems with heavily bleeding during my period with blood transfusions as result. Also the hormones were very heavy for my body and didn’t work enough to get it stable. Since the age of 16 I’m in the menopause by medication and have no period anymore.
Since the age of 17 I’m an volunteer at the Dutch Hemophilia Society. My visit to the WFH congress in Istanbul 2008 makes me realize that there is a lot to do to get more knowledge about rare bleeding disorders and women with bleeding disorders. Men and women are different in bleeding symptoms and social emotional. But also the environment deals different. When a men has a bruise he was in a fight what makes him cool. A women with bruises get abused.
I’m happy to see there is more and more attention. And thank you WFH for the theme ‘hear their’voices. We need to know so much more about the problems women has to deal with.

my twin sons suffer from Haemophilia which is something that changed all our life
I live in Syria, Aleppo. The war is affecting us in a very bad way – no medicine, no money, no hospitals available and so many other things- my sons are 14 years old. 9 years of them passed with the same grieve that all other patients have but the other 5 years were really disastrous. I lost my husband and our house in the war two years ago and from that time I started working and running from workplace to another just to collect that amount of money which I can pay to get the medicine which can hardly be available here in Aleppo.
My kids are the only thing that I still have in my life. I was and I am still striving just to help them get well. I have tried a lot to leave Syria to another European country where I can help my children get a better life but it is impossible to do so in the current situation because they can never take that long and terrible journey which so many others have taken before.

My name is Moline and I live with my family in Nairobi, Kenya. I am an Ambassador for MyGirlsBlood.

Nairobi is a very beautiful city with tall buildings including Kenya’s Presidential and Parliament offices. Tourists like the city of Mombasa better, because it is by the Indian Ocean; the port city of Kisumu is on the banks of Lake Victoria and the views are very beautiful.

Nairobi city has more people than any other city in Kenya. Many people work in Nairobi. The people, who earn more money, live in lovely areas and comfortable homes. Those people who earn very little money live in slums. The seven members of my family, including my mum, my dad my four brothers, my little sister and me, live in a single room. The room is not that large, but we manage. It has our beds, a few seats and a place where we can cook and eat our food. The food I like most is chapatti, made using wheat flour with chicken. The bathroom and toilet is outside and we share it with other neighbors.

I was born in 1984, but I did not find out that I had von Willebrand disease until I was16 years of age. Of course I had had serious bleeding episodes before that, and even one at my secondary school when I nearly died. I wasn’t always taken to the hospital, when I had bleeding.

I had a relative who said I was bewitched and tried to treat me with herbal medicine. It didn’t work. Not all of my family members believed that I was bewitched. Everybody had an opinion. Some thought I played too much.

When I was 5, I had a nosebleed that took 6 hours to stop. Everybody in our family was worried. They used cold water to reduce the bleeding but after a few minutes it would start again. My mum took me to a clinic where they told her that nosebleeds were normal for some children and that when I grew older it would stop. They told my mother to put cotton wool swab with liquid paraffin in my nose and use clothes for a cold-water compress on my head and neck.

At school, children would avoid including me in their games because they feared I could start bleeding. Teachers would remind me to avoid anything that could cause bleeding because whenever I bled, I would have to stay home for two days or more until I was better.

My secondary school was a boarding school and the teachers were always asking what my illness was and how it was treated. When I had a bleed I was taken to the nearest hospital and sometimes home, so I was in and out of school until I finished.

My condition was finally diagnosed when my younger brother, Javan, also started experiencing bleeding problems. When he was in the hospital he was diagnosed and we learned then that my father and I had von Willebrand disease too. My mother was really wondering how we would cope with paying hospital bills every month.

Once when my brother was in the national hospital, my mum met a woman named Maureen whose son had haemophilia. Her son had died because of lack of quick attendance by the doctors in the hospital. Maureen talked to my mum and said she wanted to help. Maureen started an organization to help those living with haemophilia and their families. The organization is called Jose Memorial Haemophilia Society of Kenya (JMHSK). My family was invited to attend the first meeting.

The day JMHSK was launched was the first time I knew I was not the only lady suffering from a bleeding disorder. I met over 20 girls and women that day. I made friends with three, two who were sisters; we shared our stories and agreed to follow up with each other about our problems. Sharing our stories encouraged us and we thank God that we have learned about our problem and know how we can handle it.

At the meeting of the JMHSK, I also met Laurie Kelley who founded LA Kelley Communications in 1990 and Save One Life. Laurie helped members of JMHSK to get clotting factor and gave us assistance so we can attend our haemophilia clinics.

Since that first meeting of JMHSK, I have met 16 girls and women with haemophilia through the MyGirlsBlood campaign that lasted from the month of January to March in Kenya. I have met some women who have no knowledge of their bleeding problem, some believe it can be solved with herbal medicine or spiritual intervention; others are ignorant that they have a problem. Some women I have helped have agreed to seek medical attention for the first time.

I believe it is vital to be involved. I volunteer in any activity that will help women to know about haemophilia, like trainings, counseling sessions, having campaigns and seminars in Kenya. In my country many are suffering because they do not have the knowledge they need. Most of all, I wish that haemophilia clinics could be opened in Kenya so that all the services people with bleeding disorders could be together and these services could be made available to people who do not have the funds because they are poor.

I would like to teach others and help them to learn about haemophilia and how to manage it. Acceptance comes first. It helps people to cope and be open to learning. It leads to a better life. My dream is to prevent people from dying because they are ignorant or do not have the money to afford the medical care they need.

This is why I am an Ambassador for MyGirlsBlood.Infact it was a great opportunity since MyGirlsBlood helped me attend the 2016 world hemophilia congress which i gained more knowledge on how to deal with my condition and hemophilia at large.
Currently creating women bleed too awareness in Kenya.

Between 2014 and 2016, I spent a total of six months traveling throughout India as a volunteer project manager for the Hemophilia Federation of India (HFI). It was an honor to participate in the first year of development of a newly forming Women’s Group.

A little background: At the 2012 WFH World Congress in Paris, during the Poster Session, I met with two young men about their very active youth program activity. Seeing their poster with only male faces, I rudely interrupted them saying, “Where are the Girls?” After that conversation, they talked with others at the Hemophilia Federation of India (HFI) and together with the support of the Novo Nordisk Haemophilia Foundation (NNHF) they decided to create a Women’s Group. They believed that strong women create strong families. The Mission Statement was written as: a) Empowerment of Women in all respects, b) Forming Women’s Support Group, c) Dissemination of information and knowledge to other caregivers, d) Identification of more and more women leaders.

India is a country with a population of roughly 1.2 billion people. The HFI had about 14,000 people with bleeding disorders on their registry, mostly males with hemophilia. Only a few were females. And tragically, a person living in India does not have access to medicines and treatment like those in countries such as USA. Their government pays for small doses but only if someone is in admitted to the hospital. It is extraordinarily expensive to someone who is likely to be earning very little money to begin with. Even if they could pay for it, they cannot take it home to infuse prophylactically. As a result, many are left at home with their families and suffer crippling effects.

It was thought that if we could bring women together throughout the India national hemophilia community, we could begin to help families. The women could provide awareness to others in their local area about many topics related to bleeding disorders. And if they needed help, there would be a network of other people through HFI, who could offer ideas including legal assistance, psychosocial support or financial assistance.
Every culture and country has it’s set of unique challenges. Because India has many languages, some workshops required translations where a few sentences in English would be translated to Hindi, Tamil, Malayalam, Telugu, and Kannada. As a result, some workshops took longer and went late into the evening. But these are strong and determined women who attend these meetings. As another challenge, India is a very big country with amazing terrain challenges. Women attended these workshops and often times it was the first chance they had to travel outside their home town. Many would ride on a train for 3-days straight to attend our 2-day workshops. The Women’s Group held eight regional women’s workshops with attendance of 20-25 women at each one. I presented project management concepts at their workshops in New Delhi, Thane, Puri and Bangalore. Then, they held their first-ever women’s group annual meeting that brought over 100 women together from all over India to the city of Bangalore where the project was graduated into a sustaining organization. There were also individuals from other countries who attended and took back ideas to their country. They were from the Philippines, USA, Iran, Malaysia, and Argentina.

During this timeframe of volunteering, I also presented information about girls and women with bleeding disorders and capacity building through involvement of women. These opportunities were in a medical symposium in Guwahati, an Annual General Meeting of the HFI in Kolkata and a Capacity Building workshop in Bhopal. Also, I attended and spoke at a government advocacy meeting in Bhubaneswar, an HFI Chapter’s Annual Meeting in Ahmedabad, met with individuals from the Manipal Hemophilia Society, and enjoyed a Women’s Group function in Rajkot highlighted by visiting with a mother of a factor V child, who tried to teach me to hand-stitch tiny mirrors into fabric. I also flew to the Philippines and to Malaysia to support early development meetings with individuals who also wanted to start a national women’s group.
I know first-hand, having been a stepmom to two girls with factor V deficiency, a rare bleeding disorder, that caring for someone with a bleeding disorder takes special knowledge, skills and strength. Girls and women who may also have bleeding disorders often belong to a family with others who have bleeding disorders. This program recognized that to be able to successfully care for someone else, the caregiver must first take care of herself. As a result, this program included information to help a caregiver who may also be a woman with a bleeding disorder or who may have a daughter or a son who has a bleeding disorder.
The method was a Train-the-Trainer approach where 12 women were trained and then they began training nearly 100 other women. The Women’s Group of Hemophilia Federation of India believed that the importance of getting a good foundation for the first year would include working with the men and the youth of their Indian community because the men of the HFI organization actually wrote the grant and lobbied to begin this group. It was the men who provided the energy and resources (by calling upon the youth group) to ensure the women’s training programme was a success.

In their 2nd year they began organizing and conducting meetings on their own. The Women’s Group has representation on the Hemophilia Executive Committee through a Chairwoman. They are busy throughout the month of April preparing for World Hemophilia Day getting ready for more workshops and other activities to bring awareness and support for their community.

A few outcomes of this work included financial support for women requesting help such as a sewing machine project where women could request a sewing machine from HFI to start a business in her home. Often, women cannot leave their home because they are taking care of their child, or they themselves have bleeding issues.
Another outcome of this activity were two funds that were established to pay for testing for girls who have excessive menstrual bleeding. One in New Delhi at the Sir Ganga Ram Hospital and another through the Kasturba Medical College Hospital.

To accommodate the need for extensive travel, I took two separate leaves of absence from my employment, and I visited with my family using Skype.
I am writing this story with hope that others might consider taking time away from their day-to-day job to offer their skills as a volunteer to help build capacity somewhere “far away” where our bleeding disorder community needs both your generosity and your help.

My name is Tammy Davenport Treat and I have hemophilia A. I was diagnosed when I was 5 years old. My father also had hemophilia and my 22 year old son does also. As an adult, I realized I had joint bleeds growing up that I didn’t know I was having. Now I have extensive joint damage. I actually bleed more than my severe son does. Despite having my diagnosis, I have been put through major surgery by my former HTC without factor, delivered my son without factor and been subjected to disrespect and degraded by medical staff due to the opinion that women cannot have hemophilia. Obviously we know otherwise. I started a nonprofit to help other women in my position. The Women’s Bleeding Disorder Coalition was founded in 2015 and we have since undergone a formal name change and mission expansion. The WBDC is now a division of The Valkyrie Foundation and we also serve female veterans. As a certified yoga therapist and meditation consultant, I incorporate these into our programming. Yoga has helped me remain physically active and the combination of yoga & meditation has helped me deal with chronic pain and the depression that comes with it. My hope is that it can help others as well. When I founded the WBDC, there was very few people/organizations willing to stand up and raise awareness for women. I am thrilled to day that we are finally being taken seriously. This isn’t just a quality of life issue, having an accurate diagnosis and treatment is a life and death issue. Gender should play no part in treatment decisions. As we continue to move forward with gender equality in bleeding disorders, I hope our daughters do not have to fight this same fight.

Hi, I am a 27 year old woman with a fierce determination to live and make the most of life. But my body fails me daily. I have Ehlers Danlos Syndrome (EDS) which effects my heart, joints, gut and other things. I have very hypermobile joints and lots of joint pain and bleeds. When I was diagnosed with EDS, it answered a lot of my unanswerable questions like why my joints hurt, swell and how I can turn my body into a pretzel. However; EDS does not explain why I have chronically low potassium and iron or why I can’t put on weight. The question that is being thrown around now is “am I bleeding?” What I don’t understand is why the doctors ask that question but won’t test for clotting factors when then already know I bleed fast and take extra time to stop. I recently took the Self BAT test (Self Administered Bleeding Tool) and scored 14. I am getting tests done to confirm. After all, if EDS is considered to be a bleeding disorder then the logical thing to do is test for which bleeding disorder I have.
I may appear to lead an active, fairly normal life to the casual observer but in my private life I attend many medical appointments and sometimes need to visit the dreaded emergency department which seldom goes well. I use an ACROD permit so I can still do my own grocery shopping and errands when I can barely walk because of knee and pelvis dislocations. I get the stares and the comments because I don’t look sick but I am still a human being trying to make the most of life.
To the Doctors in Emergency, please remember this: patients who present with complex medical conditions as part of their written medical plan ARE human beings who live as well. Please, put aside your judgements and assumptions and treat us with respect. We are not there to make your life difficult and we certainly don’t want to take up a hospital bed. Doctors, why do you crush us with your harsh words instead of owning the fact you have no idea what this condition is or how it really affects my body? Why not Google it or listen to the patient or heaven forbid – take the time to read our file? After all, we do live in our own bodies.
I may be a person who lives with the complexities of EDS and other associated conditions but I am also a Christian, a counsellor, a friend, a nanny, a person who loves music and the arts. I also love to create and be outside.
Next time you see someone with an illness you can’t see or pronounce, please withhold your judgment and take the time to listen. Who knows, you might learn something.

It is a challenge. Two generations of women before me, then me, then two generations after me have hemophilia B and severe bleeding histories. I now strugfle to get a perscription for factor. By the time I am seriously bleeding, the doctors watch and if lucky, I will get blood products.
I have great concern for the accuracy of testing Of factor levels and lab work.
It is very difficult to get an order for factor, even though, the male family members can get treatment. We also are fully trusted with our male relatives, but heavily structured and investigated to make sure we are telling the truth.
Thank you for asking!

I was one of the lucky ones being diagnosed shortly after my birth with VWD type one along with my two sisters. I was lucky, because I grew up my whole life knowing I had this condition, since I was diagnosed shortly after being born due to a family history. My most common symptoms are heavy periods, anemia, bloody noses, bruises, and trauma induced joint bleeds in my right ankle. My first period was at age 9 and due to the severity and length I went on birth control at that age. Growing up, I never felt I was different because of this disorder, when I got a bloody nose I dealt with it. When I bruised, I showed my sisters and we compared to see who had the bigger ones that day, it was a normal experience living in a house of 4 women with the same condition.

My mom was diagnosed in her 20’s while serving in the military and grew up suffering from heavy periods, dental bleeds, and heavy nose bleeds. Growing up, my mom always inspired us to speak our minds and be sure to advocate for ourselves and our condition, making sure that we had the same opportunities as everyone else. When we moved to Wisconsin she became an active volunteer in our local chapter. She would lead girl scouts in activities to teach them about bleeding disorders so that they can earn their health badge. She’d go to local health fairs to help raise awareness to clinicians, parents, and others about bleeding disorders or she would deliver poinsettias to help raise funds for our local chapter. With all of these activities, my mom took us girls with her (at the time begrudgingly) but as we watched and observed her passionate advocacy efforts we learned and as we got older, we began to take over.

My bleeding disorder has allowed me to become a fierce and passionate advocate since I became involved in CBE (MI) in 1998. My years at camp have been tremendously impactful into the person that I am and what I want to do in the future. As a camper, I was blessed to be able to learn about my bleeding disorder and be surrounded by people (other than my sisters) who had it. However, my formative camp experiences came when I was older and became involved as a counselor in training, a counselor, nature director, camp manager, eagle outpost counselor, and archery director. I don’t think that there is any other more incredible feeling than helping youth understand their bleeding disorders through various programming efforts. It’s amazing to watch kids as they realize that in the camp environment they are not the only one affected by a bleeding disorder and that for that one week they get to live a worry free life. The various roles I have played at CBE have helped me determine my lifes passions and where I would like to go once I enter the professional career. My goal is to continue working in higher education as a professional residence director in housing at a university. Then after serving in that role I want to work with underserved youth (especially in the bleeding disorders community) and help connect them to resources as they transition into high school and college.

I got involved in my local chapter on the advocacy committee and was sent to DC, I coordinated a panel on aging as a woman for my state chapter meeting, and when I was 18 joined the National Hemophilia Foundation program, NYLI. During my time in NYLI along with time time as an undergrad at UW oshkosh I continued to fiercely work to raise awareness for people with bleeding disorders. I attended Washington Days and met with my legislators to promote legislation that impacted the health of our community. I spoke at the national conference twice about my experiences as a person with a bleeding disorder and about the benefits of going to bleeding disorders camp. At the international bleeding disorders camp conference (NACCHO)I lead a session about retention and involvement in young adult staff members at camps. These experiences inspired me to take a position on my campus as a Health Advocate, helping give my peers in the residence halls access to health items and health education. Additionally I was involved in my campus’s World AIDs Day event, bringing a hemophiliac as the keynote speaker and creating a table all about how the bleeding disorders community was impacted by the HIV/ AIDs crisis.

I have also been fortunate enough to take my passion for the community to the international level as I attended the last 2 WFH conferences (most recently winning the Susan Skinner Memorial Fund Scholarship). My first WFH congress was in 2014 (Melbourne, Australia), after not receiving a scholarship to attend, I was encouraged by my peers to pursue my passion and raised the funds to attend via social media fundraising. This conference allowed me to network with folks from all over the globe, create new friendships and connections, and learn about bleeding disorders issues on a global scale. I came back with a renewed vigor and passion in my heart to continue learning, growing, and advocating for this community that I was so tremendously passionate about. Later that year I became a member of the Right to Live Campaign social media team. It is a group that started out raising awareness for those with bleeding disorders in the Philippines, but quickly grew to an international network and page where we could share information about bleeding disorders on a local level. Our team is composed of folks from India, the Philippines, Australia, and the US. Additionally, after learning I had received the Susan Skinner Memorial Fund Scholarship for the 2016 World Congress, I became an active member and volunteer in preparing the first ever women’s booth for the congress display area. After attending the WFH 2016 Congress activities I realized that there are many issues that we as a global bleeding disorders community need to focus on strengthening and growing to keep the amazing momentum that this occurring all over the globe. Through attending the WFH Congress activities I also discovered some personal things that will help me in my future, I will also discuss that. Through my congress activities I discovered three things to focus on moving forward for myself and the global community. The first is all about women and establishing a better base of education, awareness, and connection for the females across the globe who suffer from bleeding disorders. The second thing that could improve growth is continuing the legacy and stories of the HIV/AIDs generation from within the bleeding disorders community. Finally, the WFH Congress activities helped me solidify my passions and helped me discover where I would like to go in my career path. This final section will go in depth into all three of those areas as well as conclude with my final thoughts of how amazing my time at congress was.

Because of this encouragement from my mom I have been able to travel to Europe and Australia. I have completed by bachelor’s degree and am currently working toward my masters degree in public administration, hoping to one day give back to a community that has given me so much. So while my bleeding disorder at times can be limiting and inconvenient, I overall feel tremendously blessed by my diagnosis. It has provided me with opportunities that have otherwise seemed unfathomable and because of the support of my family, mentors and friends I have been able to overcome my disorder to soar to new heights in helping to raise awareness of bleeding disorders.

I had extreme nosebleeds (gushing, 2 hours long, etc) throughout childhood and prolonged dental bleeding. When I was 12 I got my period and it was a nightmare from the start. 10 days long, clots, debilitating cramps all kept me from school and activities every month. I was put on the pill at age 16 and told I was anemic. (I never had any fingernails and ate ice constantly, not realizing the correlation!)

After childbirth I bled heavily for 7 weeks. I loved how I felt when I was off the pill, so I tried to stay off after my daughter was born. I got my period back when she was 10 months old, and it got progressively worse throughout her toddlerhood. I had 4 unexplained miscarriages, and went to 3 different doctors, complaining of my bleeding. One female doctor told me, “That’s why they call it The Curse”, and did no testing. I finally got a GYN to take me seriously when I told her how much blood I was loosing (an average period is 30ml of blood – the entirety of a menstrual cup. I was emptying my overflowing cup every 60-90 min for the first day or two, and every 3 hours for the remaining 6-8 days). When she did a CBC my hGb was 5.5.

I was referred to an HTC, but I had a hard time getting them to take me seriously as well. I begged them to run a platelet aggregation when nothing else showed up, and it revealed a platelet disorder called Aspirin-like Defect. Even after diagnosis, I had a difficult time obtaining treatment. I could not get my HTC to give me a referral to an ENT so I could obtain a cauterization for my daily 1-2 hr nosebleeds that had been going on for over a month. I also could not get any treatment offered to me except for birth control and Stimate. Stimate did nothing for my bleeding; I bled so heavily on the Mirena IUD that I expelled the first one after 2 weeks. I tried that regime for 5 months and could no longer take the daily bleeding and side effects of Stimate, so I opted for a hysterectomy at the age of 38.

3 weeks after I was diagnosed, my then-5 year old daughter was, as well. She has random bleeds now that can be managed, but I know what she will face when she hits puberty. When I became an advocate for her, I understood how much had been lacking in my own care and treatment options. Her story will never be like mine. She will receive specific treatment for the actual disorder she has – not just birth control. She is 7.5 now, and I hope research will catch up in time for her first period.

Thank you for creating this space and drawing very necessary attention to women with bleeding disorders!!

Bonjour je suis maman d’un petit garcon atteint d’hemophilie A sévère. Maladie que je ne connaissais pas avant qu’on le diagnostique à l’âge de un an. Durant sa première année de vie je savais que mon fils avait quelque chose car il attrapait facilement des bleus avec une boule. J’en ai parlé plusieurs fois aux médecins qui me répondaient tous la même chose (c’est normale c’est l’hématome). On ma également accusé de frapper dessus car juste le faite de le porter a bras on apercevait la trace de mes doigts sur son corps ! Aucune analyse n’a jamais été faite pour savoir si il avait un problème personne ne voulait prendre son cas au sérieux jusqu’au jour de ses 1 an ou une opération était prévue car il est né avec un testicule pas en place et qui devait être replacée avec une opération sous anesthésiste. J’ai expliqué au chirurgien qui devait opérer mon fils qu’il faisait facilement des bleus et le trouvant très pâle une prise de sang approfondie a ete prescrite par celui-ci.
La prise de sang a été un vrai calvaire car on a du le piquer plusieurs fois dans les mains jusqu’à ce qu’on parvienne a avoir du sang car les veines étaient fragiles et difficiles. De retour à la maison mon fils était très difficile et ses mains faisaient que gonfler, gonfler à tel point qu’il ne savait plus rien tenir avec ses mains et la j’ai couru aux urgences de nouvelles prise de sang ont été faite et la le diagnostique est tombé.. Mon fils, mon bébé est atteint d’hemophilie sévère.

HI, I’m Nataraj, 28 years young male from India. I’m a person with severe Hemophilia A. Though I was showing symptoms since 3 months young baby, I was diagnosed only at the age of 6 (Fortunate enough I believe, lots of people are not diagnosed even till the age of 50+ years in their life, due to lack of awareness). Till the age of 6 my parents consulted about my condition with many doctors but not use because of lack of awareness. At the age of 6, I fell from hay stack and landed using my right foot which caused severe bleed in my right ankle, it was at that time only one doctor refereed me to a hematologist, that hematologist only suspected I may have a bleeding disorder and point us at right direction to Christian Medical College(CMC) Vellore, where I was diagnosed with Severe Hemophilia A. Ever since I was restricted from physical activities like playing and sports due to fear of injury. But , I was advice by mother to do things slowly and carefully so I may not end up in pain. I took her advice and I believe that saved me from lots of pain and protected my joints well. As the years went by we consulted many doctors in different medicine field, tried so many medicines, but what ever they promised never worked from me. At the age of 14 I lost hope in all the medicines and slowly started giving up on them. I focused on training my mind and took medicine only when I was not well. Due to lack of physical activity, I was gaining weight, by the age of 16 I was about 80kg. I wanted to reduce my weight so badly, and it was also causing problems in my joints. I started walking, cycling, but I was never able to reduce my weight, I never gave up on trying to be active. I exercised when ever I could. 2009 I attended my first youth camp where I learned about the importance of physiotherapy. I tried my best to do physiotherapy regularly and with in 6 months I was able to feel the difference at my target joint. In about 2 years I was able to recover my target joint and also that kept me away from getting spontaneous bleeds. I gave me more confidence and hope, I was turning point in my life and I started to involve more in our chapter activities, my passion to help others like me, made me stronger and healthier. I became the regional youth representative of south India for Hemophilia Federation (India) and seeing my enthusiasm our chapter secretary requested me to become the president at our local chapter. Our lobby with our city government hospital resulted in faster treatment and better awareness among the doctors in there. Now were are trying with nearby city government hospitals too. Since the beginning we are giving equal importance to females with bleeding disorders and they are also treated equally at the government hospital. We have identified about 15 females with various bleeding disorders and got them registered at our chapter. Since July 2014 I changed my diet to very nutritious diet and was able to reduce about 25 kgs in 2 years time. This not only improved my quality of life but and also showed me an alternative way to lead a healthy life with hemophilia with out / less factor treatment. Now I can jog of about 10km and do workouts also. I’m sharing my experience which changed my life with others, those who tried also replied me with a positive response.