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Maryam un nisa

Pakistan

Childhood I​ ​belong to a village. I am 28years old, I have type 3 von Willebrand disease. I was diagnosed at about 6months old, after losing my milk teeth bleeding didn’t stop. My elder sister already died due to VWD.i have 3sister I am on the third number my younger sister also has VWD.my parents never overprotect me. I don’t get injured during sports at home or school due to taking care of myself​.​ companions and school teachers are very prudent. The main problem with me was gum bleeding. I suffered a lot due to gums and teeth problems.

Challenges My first period arrived when I was 16 years old. a month before starting my matric annual exams. bleeding becomes heavy that I left puddles of blood wherever I sat or slept.i spent a month in the
hospital receiving blood transfusions to replenish lost blood and iron tablets for the resulting anemia. My parents were faced with two treatment options, either monthly blood transfusion in hospitals or starting me on the combined contraceptive pill.i was the young of my two sisters and my youngest sister also have VWD my father was retired PAF., my parents decided the pill treatment would be the best option. Back then it was not common practice to involve the child in such significant decisions. I Never give up and continue my studies. I also started a diploma in cloth stitching.after my diploma completion I started teaching in my village school. Another life-threatening accident happened on 18 July 2019. I feel a little bit of abdominal pain due to constipation which goes severe in two days. my parents, and hurried into the hospital. After the blood test doctor said her HB is 4point., I was sweating and the faint frequency after the ultrasound doctor diagnosed that I have intestinal bleeding due to constipation.
I was shifted to the ICU. factors, FFPs, CP gave as a treatment to stop bleeding .many of my family members thought I could not be anymore because hearing the name of ICU everyone was saying that it was difficult for me to survive but by the grace of ALLAH I started recuperating and after one month I was fully recovered. Social issues. My medical condition is no secret, all of my relatives and our community know about it. Looking back I don’t care that they knew.it was the misguided views and assumptions that we’re made about it that caused the heartache. Rather than making the effort to understand the reality of medical conditions. It’s easier for people to jump to the conclusion that it’s something debilitating and crippling once people know, all that can be seen is the
medical condition they don’t see for the person you are.i have no brother, in this community people’s thought parents are hard-luck who have only daughters and if daughters are patients then you all of understanding what the society thinks about us. Growing up I often heard comments like oh’ she’s the one who is ill, she has the condition and worse, she can’t get married. wherever you go, whether it’s a wedding, funeral or any other family gathering people’s look at you and you know they are talking about you. The more you hear these comments the more you start to believe them to be true. Education and career After bachelor, I started a masters degree in special education .i faced many health issues during the study, I started work at school as a principal, which built my confidence to further my education and career .my patents and also other family members encourage me a lot .they all made me sure to drive problems and became an independent woman. Betterment in my health and life. I stopped taking the contraceptive pills at the age of 24. To my surprise and delight, I developed a normal menstrual cycle. My period was not heavy at all and lasted 7days. With care and medication, my gums become healthy and now a very small chance that my gums can bleed, Which didn’t require factors or FFPs. Treatments. Now I manage my bleeds at home using basic first aid techniques and tranexamic acid if I need it, in case of emergency I visit my hemophilia center which is quite rare now. I take iron tablets
regularly to maintain the HB level. by the guidance of hemophilia society, they trained their patients on how infuses factor to ourselves and I can do this at home. MOTIVATION Difficulties in our life don’t come to destroy you but to help you realize your hidden potential while it’s taken me a long time to learn a lesson.life with VWD really is what you make it .its my faith in ALLAH that has got me where I am and motivates me to rise above my bleeding disorder. our hemophilia center provides us many opportunities that how we manage our lives and meet with other patients like us are a great motivation for all of us. .MESSAGE FOR ALL MY FRIENDS. You can live life and do what you want in spite of what you fear and worry about. You can put your disorder on the back burner, live life one day at a time and try to make the most of every moment. life is very beautiful to enjoy it fearlessly.

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