The Knowledge Board:
haemophilia
Hi I'm Belinda, I'm your community manager at The Patients Voice.
You can reach me at belinda.shale@healthcarelandscape.com.
If you have not done so why not join The Patients Voice by clicked on the Join TPV tab on the navigation bar above.
Thanks very much for dropping by to our online discussion forum or blog on haemophilia (hemophilia). We would like to take this opportunity to invite you to share with us and fellow members of the haemophilia (hemophilia) community your experiences with the condition and attitudes toward treatment.
Indeed we are keen to hear from carers, friends and, of course, family members and get their perspective.
We are especially interested in the following questions:-
• What is your experience of living with a bleeding disorder, specifically haemophilia/hemophilia?
• Are other family members affected by haemophilia/hemophilia?
• How was the haemophilia/hemophilia diagnosed?
• How are you coping with the treatment for haemophilia/hemophilia? What improvements would you like to see?
• What do you think of the recent independent public enquiry launched by The Rt Hon Lord Archer of Sandwell QC which is examining how a generation of people with haemophilia/hemophilia was infected with HIV and/or hepatitis C and its consequences? While this mainly affects people in the UK all comments on this important question would be really useful to us.
• What do you think of gene therapy? Do you think it is a major milestone in that it could be a way to change the way someone's body works so that the body can produce the missing clotting factors on its own?
sundance | 10/04/2007 17:04:00
hi Gene therapy: really interesting question If this could be done as standard practice, that would be wonderful and no person would potentially suffer again.
Roger | 10/04/2007 17:29:00
Considering all else it is a condition which you have to learn to manage; your whole lifestyle changes with it especially for younger people. You have to limit your activities and be so much more carefull. it certainly does affect those around you especially. As a young person I would love to hear how other people are coping with it
Thomas | 10/04/2007 17:50:00
I am very flattered that you left a comment on my science blog, but I'm afraid that I cannot be of much help. I am no sufferer of haemophilia, nor am I a medical professional. I am merely a scientist who did some research in gene therapy a few years ago, without targetting any specific disease (it was essentially basic research). Thanks and best of luck.
Joe | 11/04/2007 18:50:00
First off, I am honored that you’ve commented on my space (nobody goes around there anymore lol) ThanQ. I am an 18 year old boy from India right now living in Bahrain, and I am an acute hemophiliac (0%). Living with hemophilia has never been easy, for me and my parents. The financial, emotional, and physical strengths required are a bit much for an average family. I was diagnosed with hemophilia when I was 5 or 6 months old, and is following an ‘on-demand’ treatment protocol. Of what little I know of gene therapy over a few long awaited years, I think it's a fabulous idea, I just wish things would pick up and it would be put to effect as soon as possible. A few hemophiliacs and friends have initiated Hemophilia day on the coming July 9th, and every year after. Please show us your love, care, and support by going to the site given below and rating and/or commenting on his latest video on that day. We thank you for your participation. Please tell your friends, we can use all the help we can get. For Your Support> http://www.youtube.com/profile?user=drewskiwolf My space> http://freedomjoe.spaces.live.com/
Joe | 11/04/2007 19:55:00
Sorry, I apologize for the misinformation given. It happens that there already is a Hemophilia day and it's on April 17. Again, sorry. But we would still appreciate the help. Thank you.
sandra | 14/04/2007 12:52:00
I also thank you for contacting me but alas cannot help as I have Glanzmann's thrombasthenia, another form of bleeding to haemophilia. Naturally I am interested in gene studies as it important to my survival as well. If I can help please let me know. Sandy
Kathryn (Australia) | 15/04/2007 03:16:00
I am a haemophilia carrier, my late father was haemophilia A with acute antibodies. His surviving brother is also affected, while 2 brothers were unaffected. I totally support the enquiry, why has it taken so long? The late 80's & early 90's were a nightmare for the entire haemophilia community. The fear & media frenzy brought about by HIV/AIDS & Hep C was devastating, it's impact will always be with us. It destroyed lives and families, but also hope for too many. I support gene therapy although in it's infancy has the potential of making such a significant difference.
Joe | 18/04/2007 07:04:00
Dear Kathryn from Australia,...... I have met a few hemophiliacs in my life, and being one have understood their pain. But I have never met a carrier, (my parents weren’t carriers or victims of hemophilia for about 3 generation back as far as I know, it was a sudden mutation In my case), so what I wanted to ask was How you feel as a carrier, do you fear for your child, or your grandchildren? do you find the financial requirements needed to back up such a life hard? Just anything you'd like to share here id love to hear. Thank you PS: hope your child is born to a world without hemophilia.
razvan from Romania | 20/04/2007 13:29:00
Hi to all..I suffer with hemophilia since 9 months age.Now I am 25 and I am an IT engineer in Romania ,Iasi at a software company from Germany....Hemophilia is a real problem,I take the factor 8 everyday with me at the work,travels etc and here it is a real problem with this treatment...Do you have any idea about the status of gene therapy for hemophiliacs?..I wish to live the day when this illness will be eradicated...it is a big stone for me...If is anybody here who needs my help let me know..
Linda | 20/04/2007 14:36:00
I am the mother of 14 year old Jordan who has severe hemophilia A. When he was born we were told that within the next decade scientists would reach a cure for hemophilia and gene therapy would be in an advanced stage. 14 years on and I am disappointed with the lack of advances.Jordan is on prophylactic treatment with recombinant factor - certainly the best treatment available, and one which makes his life almost worry-free, but right now he is in severe pain from a shoulder bleed (his first bleed in a couple of years) and it hits me how severe this disease really is. We would love to see a cure. If gene therapy is the cure, more resources should be applied to this end. I feel that the drug companies have no desire to find a cure for the disease, they would prefer to put their money on finding alternative treatment methods, such as longer-life factor. It would not be in their interest to find a final cure for hemophilia.
funda akkoca | 20/04/2007 14:41:00
Hi, my son is 3 year's old and hemophiliac unfortunately. I have learnt that I am the carrier when he's 1 year old. We live in Turkey, fortunately we never have problem about getting factor. I hope gene therapy helps us as soon as possible..
pixeltip | 21/04/2007 00:09:00
I am a severe A, usually register at 0%. 28 years old, and narrowly missed the contamination epidemic of the 80's. However my uncle did not, who was about 10 years older, aquired HIV and died within 2 years. Have another "severe A" uncle about 6 years older, also HIV negative. Losing my older uncle slowly broke down our family, that is something a family can never fully recover from. Never had an inhibitor, exposed to Hep C but cleared it. I think I was diagnosed at 3 months. Live in MA, USA, attend college full time. Because of the rampant bleeding in my ankles, schooling was difficult, but I am almost through. Had both ankles fused over 3 surguries between 2004-2005. Now I can walk quite normally and without any pain; it was the best decision I ever made. Main target joint now is right elbow. Some damage has already set in (often feels like gravel in the joint). The pain is often debilitating and demotivating, but I get better at controlling it every day. Do not use any pain medications or "other" substances, and find alternate means to deal with pain. I also participated in a gene therapy study in 1998-2002 that had very promising results, but it never progressed to phase 2. It made it through the safety phase with flying colors. This study did not use a retrovirus, as most did. Treatment (doctor visits, surguries, factor VIII and ancillaries) is funded by state health insurance, there is no cap, and my copays are minimal. However this is never stable, and when I enter the workforce and are forced to use privitized insurance, I am deeply worried about the "lifetime cap" issues. Hope this is enough info!
Karin | 21/04/2007 08:46:00
People don´t run so fast ...take it easy , before the Gene thearpy will real be born in a really way you have to keep in thoughts the big differentcy between the types A and B of Hemophilia aswell....Type A is different and not as easy in research as type B.Solvation for If there is an Inhibitor in the "game" aswell Pls don´t forget that aswell? Gene therapy won´t let itself push for my feeling you have to wait a small 10 to 20 years before it do works prob. sorry..... a Mother of once 18 years boy with severe Hemophilia B with Inhibitor. pls feel free to vistit : http://groups.msn.com/MemorialJeroen/ http://groups.msn.com/SunshinesPlace/ http://sunshine.favorietje.nl/
Devinder from India | 21/04/2007 16:29:00
Hi, I am Devinder from India and also a person with hemophilia (severe). It is a great pleasure to me that you invited me to join online discussion forum. Living with hemophilia in developing country India is very difficult. My two cousin brothers also pwhs and my uncle is no more due to accident. My uncle was also a pwh.. I am 30 years and diagnosed at age of 14. My residence was in front of India's No.1 top medical Institute called All India Institute of Medical Science. Many times I and my parents went to AIIMS due to bleeding but doctors could not diagnose me. At age 14 doctors diagnosed me. My both knees do not fold due to regular bleeding. Unavailability and high price of Anti Hemophilic Factor (AHF) is a major issue. Some NGOs are working for hemophilia but unable to provide the AHF on affordable cost or free. 35% population of hemophilia live in India. As hemophilia community I request you all to do something for those people who live in critical situation in India. I also must need to do something for hemophilia in India and I hope you all will guide me to help hemophilia community.
Hemomommy | 22/04/2007 03:43:00
Hello all, I am a mother of a 5year old hemophiliac severe factor 8. We found out when my son was 9 days old. I also have 1nephew with severe hemophilia A. I have an older son with no bleeding disorders and so we thought I was not a carrier. We started to suspect somthing was not ok when I bleed continually through the pregnancy. My son has a mediport and takes factor prophlactically every other day. It is hard but we try to get him to focus on what he can do rather than what he can't. Looking back on my childhood I can see many signs of my carrier status as well as the fact that I have von willebruands. I am fortunate to live in California where we have many resources. I axoiusly await the gene therapy "cure".
Andrew | 23/04/2007 15:44:00
My wife and I are the parents of 2 boys. Our oldest, 3 1/2, had mild hemophilia A and has had spontaneous nose bleeds since 6 months of age, some quite serious. We only found out about 2 months ago. We are both behavior analysts and feel an obligation to share his data for research studies and to use our skills to help learn behavioral and educational strategies that might improve his life and the lives of others. If anyone is interested in talking more to us, please contact us at behaviorconcepts@gmail.com. We are also willing to participate in any studies and surveys that might keep advancing what is known about hemophilia and how it impacts individuals, families and communities. Best to all.
Heather | 28/04/2007 05:12:00
I am the mother of a 1 1/2 year old. We found out that he had moderate hemophilia A 2 weeks after he was born. He bled from his circumcision incision. Until that day I had never even heard of hemophilia. There is no history of it in my family and I am to be tested soon to see if Im a carrier. Other than the first incident we've been pretty lucky. He has only had to receive factor on two occasions, they were both bumps on the head. It's so hard to try to get a toddler to keep his helmet on, now that he can take it off himself. As far a gene therapy goes, I pray everyday for it! I hope that by the time my son wants to have children there is a cure for hemophilia.
Kellie Melo | 05/05/2007 02:45:00
Hey I'm running a hemophilia blog check it out at: http://www.livingwithhemophilia.org Thanks
http://www.livingwith hemophilia.org | 17/05/2007 00:28:00
I have a Biology projet that requires me to do research on hemophilia, and I would like to ask you some questions @ it.
Herr Strauss | 17/05/2007 12:57:00
I'am a hemophilic A. I am looking forwards to the day when a cure will be available for us...
Belinda | 17/05/2007 13:05:00
Please fell free to ask any questions
Gabriel | 20/05/2007 11:19:00
Gene teraphy a wonderfull thing for us,haemophiliacs but we have to dream a lot for this to happen,unfortunately...I think if haemophilia is eradicated the suppliers of factor 8 and also the doctors can only loose and that's why they say to us that we have to wait a lot...please open the eyes..are a lot of money in the middle...Have a good health condition and good luck to all haemophiliacs. http://www.timesonline.co.uk/tol/news/uk/science/article1690544.ece
susan kelley | 21/05/2007 04:58:00
I had discover when my son's were young that they were hemophillics. growing up was diffcult at times they where limited to what sport & acctivates they could play, but they over came it and grew into fine young man. recently one of my son's was informed that his daughter of 10, is also a hemophilic. this distress me major. to no I passed this to them both. my question is I don't understand, how my granddaughter got it. when both my son was found to have it , the doctors explained to me how I passed it to them and that only the male child gets it. the female is a carrier of the gene. my daughter was tested and found not to have the gene. so the dr's reassured me that the gene would not pass from son's to there off-springs. so how did I pass this to my granddaughter?
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