Strength

For many people with   bleeding disorders , pain is a part of daily life. More than an uncomfortable annoyance, pain can affect every aspect of daily life—the ability to work a full day, attend school or engage in routine activities. Pain can limit physical abilities and dramatically affect relationships. Every person with a bleeding disorder deals with pain at one time or another, often less than effectively. As a female bleeder (factor 5 deficient) - “It’s at the point where I’ve learned to live with the pain and live a anxiety and panic free life."  “Very little is needed to make a happy life; it is all within yourself, in your way of thinking.” People with bleeding disorders should remain alerted when it comes to new or different pain. New pain could signal a bleed or an acute pain that needs treatment before it becomes chronic. Recently, a few days ago I suffered from acute pain in the stomach at midnight. Immediately my dad rushed to bring in FFP (Fr...

I as a female sufferer (factor V) attended my first Global National Member Organization training and World Federation of Hemophilia’s World Congress held in Orlando- USA, which was the combined conferences of NHF and world congress in which largest gathering ever of people with bleeding disorders took place. It was an unforgettable experience of community engagement and education. I got an opportunity to represent India in the Opening plenary session with NHF in Global NMO Training. My topic was Gender Equality in Bleeding Disorders Organizations; it was such a pride in representing this topic as this was a topic which has compelled everyone to think in that context, because the content has the power to influence hearts and minds and I believe this content can be used with regards to improving the quality of life for the international bleeding disorders organization. GNMO training continued for the three days and getting knowledge also continued. It was a great experience to l...

       This year, i.e., in 2016 for the first time I am going to attend World Congress of Hemophilia going to be held at Orlando in July. As I am the ambassador of MyGirlsBlood.org, Ms. Cheryl D’Ambrosio gave me the responsibility of the Women with bleeding disorder section at the booth which is going to be set up during the world Congress. My father always encouraged me in my journey in Hemophilia Community. I am an Indian woman who believes in demonstrating to others the importance of equal rights. And my vision is clear to spread the message that “Women can be Bleeders too”: So working as a team leader in the Women’s booth in World Congress will be a great platform for me to step ahead in getting accomplished my goal.               I have also been selected for Gnmo training conducted by World Federation of hemophilia. In this training, candidates chosen from different corners of the world are train...

Here the journey continues of learning. I was the girl who was not allowed to go anywhere alone. My dad didn’t allow me to go anywhere alone. As I attended all the regional workshops alone in 2013-‘14 to get experience of the working of the women’s group of HFI, after that I was fully confident that now I can go anywhere alone and my parents also were confident after that they can send me alone as now they saw that I can handle things on my own in all the aspects. So, I went to Philippines to visit Andrea Echavez on 12 th July 2015. She is a vWD. She suffers from menorrhagia every month. It was a great trip of 6 days. I learnt communications skill and strategies from. I learnt the ways of dealing with bleeding and work, simultaneously. It was a great experience for me, “pleasure with work”. I lived with her in her house and spent lovely time with her family. I also attended the successful twinning program conducted by Philippines association. It was indeed a great experie...

                     I Nabila Husseni, female, 30, birth year 1985, Para haemophilic, am suffering from factor 5 deficiency, resident of Ahmedabad, Gujarat, India.                     When I was 8 months old, I was sleeping beside my dad and suddenly I fell down from the bed and my lower lip got cut and it started bleeding. My parents first tried to stop the bleeding by pressing it for long and applying ice on it, but bleeding didn’t stopped. So my dad took me to the hospital. At that time doctors were not aware about Haemophilia and its treatment nor there any facility of plasma transfusion, so the doctor first thought to stop bleeding by giving the whole blood and then doctor advised my doctor to get me diagnosed by telling that I am suffering from some bleeding disorder. So I got my diagnosis done at Mumbai, KEM Hospita...