Discover stories about how bleeding disorders have affected people and their loved ones.
Découvrir les récits sur la façon dont les troubles de la coagulation ont impacté certaines personnes et leurs proches
Descubra cómo los trastornos de la coagulación afectan a las personas y sus seres queridos
My name is Kathleen and I live in Michigan in the US. I was married to a man with hemophilia A back in the 1980s when HIV was in the blood supply. Nobody knew that this was such a big problem for people with bleeding disorders and their families. I learned this lesson in the most difficult way. My husband and I tested HIV positive in 1984, just after our daughter was born. Although she was born a carrier of hemophilia, she remained free from HIV. This is when I became an activist for awareness and education for both HIV and bleeding disorders. I got involved on the board of directors for the National Hemophilia Foundation and also served on NAPWA, the National Association of People With AIDS. During President Clinton’s administration I served on his HIV/AIDS Advisory Council for 5 years. My husband died when my daughter was only 8 years old and I raised her as a single parent. When she reached puberty and had many bleeding problems, further research showed that she had another rare type of bleeding disorder called PAI 1. I felt I had to do something more to educate the larger population about these two health issues. In 1999 I started the Stitches Doll Project (www.stitchesdollproject.org) for women to tell their stories in order to heal themselves and educate others. This is my life’s work. We can and must be messengers to everyone else. This community is my family and I will continue to serve.
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.
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!
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.
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.
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.
In patriarchal communities where the man is the first family member and the women always comes second, deficiency and illness in women is counted as a crime, a sin. You’re always under the gaze of your husband and his parents. My name is Fatima,l am from Iran, I am a carrier of Haemophilia. I have two sons who both suffer from the severe type of Haemophilia (type A). Most of my problems were over a long time period. So much bleeding that it usually lasted for ten days. I was twenty years old when I became a mother and I had two stillborn children. I recall the doctor saying, “she too is bleeding”.
I had an abortion once but because of the laws in my country at that time abortion was illegal. My doctor did it secretly in her office. After that I was bleeding for forty days and as a result needed another operation. A few months later I saw my doctor on TV. She was under arrest because a women died in her office whilst having an abortion. I thought that it could have been me.
With all of my problem by bleeding and my children illnesses and my husband harassment and also without commitment versus of life and our children, I decided to be a strong woman and took care of my children.
From hemophilia office called me and asked me for helping to the other patients in my eparchy.
After I got permission from my husband which it was really hard, I started working. It was an office in blood transfusion center and every things goes well utill our office was a best office in our country .
My husband left me and my children, now I had responsibility of our life ,my children and I. I have worked in hemophilia office and subsistence by marketing and I interd to university.
To my children problems added one more thing, Hepatit C! And it was really break my heart . Also most of the hemophilia children had this promlem too, Hepatit C.
Now I am a member of hemophilia society and for a while I was president .
Now my children are under treatment for Hepatit C, I hope they will be well.
Hepatitis society of Iran invited me to helping as a internationally.
I want be useful for myself, my children and also the other people in the word, and always only GOD was helping me.
Hemophilia..! I hadn’t heard this name before year ago, when my health condition was too worst, then I got know I was Hemophilia person.when i was kid i used to play all outdoor games, i had so many injuries.whenever I get injured, I bleed spontaneously. docter’s also didn’t tell about this, cause they were also not aware.after 26 years when I was suffering bleeding in my hip, I was afraid I just felt like am I going to die? I took so many medicines, I realize this is not something that we can cure so I have decided to die, but I dont know suddenly what happend. I googled and I found something similar between my hemophila symptoms and my condition, so I googled again n again and I found very much similar then I found a website called Hemophilia.org. I was tired of this pain so I have mail delhi chapter, and Kolhapur. then some person came into my house he told me if you are really hemophila person we have make some tests then after 4 or 5 days I have checked blood and they have found I was severe Hemophilia B person. I wasn’t shocked beacause somewhere I knew that might be I will be wrong but I wasn’t.
I am not blaming doctors, am just saying everyone has to aware about this hemophila thing so no one will suffer.I went once seminar and I found so many people like me and I realize I am not the only who is suffering.so I am different person not as patient but special. we all are specials. i just want to say don’t loose hope. hope is the one thing you can keep yourself alive.
Hola, mi nombre es Ana Almendares, en mi familia la hemofilia facto Vlll severa es hereditaria y la vida me ha preparado desde mi infancia para entender, comprender y aceptar esta deficiencia sanguínea. Agradezco por todo lo vivido, ya que fue lo que me ha ayudado a Orientar y guiar a mi hijo Ignacio que hoy tiene 18 años y hasta el momento ha logrado crecer, vivir y aceptar los procesos de su vida con fortaleza, optimismo y mucho amor.
Gracias por dedicar un tiempo a las madres, se que muchas, que no tiene un histórico en su vida, el desconocimiento de esta deficiencia sanguínea, les produce mucha angustia y frustración, sobre todo por no saber cómo resolver y lograr mantener la calidad de vida de su hijo y familia.
When I was 12 years old I had a tonsillectomy nine days later I woke up haemorrhaging from the site of removal was taken by ambulance (and had a helicopter on stand by) to the John Hunter Hospital where they took my into theatre for a ten minute procedure to quarterize the site they attempted this three times without success, they decided to suture the area but when the attempted to wake me up it didn’t hold I was then put back under anaesthetic and they sutured the area again this time putting me into an induced for 24 hours. I was in theatre for 6 hours and required three blood transfusions and factor eight. This was when I was first diagnosed and with Von Willebrands disease
A few months later I started my first period within a few months of my first period I started seeing my first gynaecologist since then I’ve seen several different gynaecologists trialling different hormones to help with my period, I’ve bleed sometimes for months and years straight without a break in between. This limited me from doing a lot of things even school I’d have a lot of time off of school due to passing out or due to the point that I could not sit threw an entire 50 minute lesson without needing to leave to change pads not just one but two or more. I’d have to sleep with towels so I wouldn’t bleed onto the bed. For me a light day was being able to wear one night time pad instead of two or more maternity pads, sometimes I’d even wear diapers with maternity pads. Occasionally I’d pass out during tafe or school and need to be taken away by ambulance. I’m 16 years old now and still have proper solution other then trail and error with hormonal treatments that can have horrible side effects
Hola, mi nombre es Paula Flórez tengo 37 años y tengo un desorden de coagulación . Fui diagnosticada con trombopatía de granulos alfa. He recibido varias transfuciones de plaquetas ya que es la unica forma de tratar las hemorragias . Yo no puedo tomar ningun medicamento . Ya me hicieron la histerectomía pero gracias a Dios tengo dos hermosas hijas . No conozco a nadie mas que tenga el mismo diagnostico . Saludos a todos y espero que De la mano de Dios todos tengamos la valentía de enfrentar todas las pruebas dificiles de la vida .
My son his name is Master Chandra Prakash Sahu when he was just 3 months we seen on his body part green and blue color patches. We been to the child specialist he said these are the normal thing don’t worry about it. But day by day he was growing his activity was incrising very fast. And whenever he got fall or he bang on any place his body part become green and blue which is take very long time to recover so we went another children specialist doctor he said go for factor VIII & XI test so when report came he was elected by factor VIII but doctor said I don’t believe on this report please you go to another biggest hospital for the test so after few days we been to CMC Vellor again we gone through the all the medical test there we came to know that my son is effected by severe hemophilia A.