Chloe's World Congress Fund
$2,561 of $3,400 goal
I'm Chloe, I created this page to raise funds to attend the World Federation of Hemophilia, World Congress in Orlando for July 2016.
My goal is to advocate for women with bleeding disorders globally for equal rights to quality of care and access to treatment by joining the World Congress this year. I attended the Australia & New Zealand Haemophilia Conference in 2015 and it absolutely was the best contribution to date.
Some of you reading may already know me, but never known this about me. I would greatly appreciate any amount of contribution to make this happen.
I'm a female patient with a bleeding disorder in Australia who was registered with a local Haemophilia Treatment Centre and have medically journied a long way since diagnosis to receive adequate treatment for my condition to be able to live a life in which I can juggle my career in the mix.
I have had first hand experience in discriminiation in regards to this over the last 7 years when needing assistant to help control severe bleeding episodes that there is a great lack of education and awareness about bleeding disorders and that they can happen amongst women. I found it particularly hard at times for even doctors to treat me equally when presenting at emergency rooms and being refused treatment altogether because I'm either a female or not taken seriously, and still do to this day. This has been mostly due to a lack of knowledge and awareness and this happens all over the world.
This condition has presented me with the most challenging times in my life but by meeting other patients and specialists, and keeping up to date by attending conferences and events I've been able to improve my quality of life and will continue to do so to help & reach out to others.
I am currently in the initial stages of creating data of my condition with various medical treatments and hoping to do so with an additional blood product medication - in which doing so will help support the use and access of this medicine in Australia amongst women, not just male patients. ***UPDATE: The Australia Haemophilia Centre Directors' Orgnanisation has formally responded in agreement for a womens bleeding disorder data project which was proposed earlier in the year, they will propose this to the National Blood Authories and I look forward to sharing further news on this. In the meantime I am happy to keep hearing from thousands of women than I have since my viral interview online with ABC. Please reach out if you need help!
There is nothing I am more passionate about in this world than equal rights, and treatment for all, being the most invested kind of candidate being a patient myself in representing and supporting people with bleeding disorders as all my friends, family and bleeding disorder community will know.
Thank you for your time!
I have just had another wave of thousands of women get in touch and commenting here privately for help. Please contact me via E-Mail firstname.lastname@example.org or private message me on Facebook. I'm doing my best to reply to everyone who needs help, please be patient!
In the meantime you can see all my updates on my personal Facebook page, my posts are public! I encourage everyone to come together and share their stories. There are millions of us out there needing help.
An unbelievably positive response from this, so pleased to hear from everyone with your support and very happy to hear from my fellow female bleeders! Some who got in touch had never met not even one other female with a bleeding disorder but let me reassure you there are millions of us!
I can now self canulate into my veins at home to infuse this on a regular basis to control haemorrhaging, it has been a very memorable time in my life as it has eliminated the days I spent debilitated from bleeding. It's been a whole knew and improved lifestyle.
I am so grateful for the existence of blood donors, I am now working with the Red Cross blood service to help them reach more donors, as a recipient of a medicine that comes from this I feel it is my duty to volunteer for as long as I receive this, which is for life!
I have been working on a global guideline proposal to present to the World Federation of Haemophilia for women with bleeding disorders together with a fellow female patient, this will assist medical physicians worldwide to treat women based on a quality of life standard. I will share the progress soon.
I'm also separately working on creating a National Government funded data research project for women with bleeding disorders in Australia, in hope that thousands of women who are still waiting on improved care can live a better quality of life with the support of my data, and potentially other women too.
I continue to work on this every single day. I've learnt so much, and hope I can help other women who are in need reach this goal where ever they are in the world. Please keep passing this on, I have another three months to reach my funding goal!
PS - Check out my first home infusion!
I had the bleeding happen once when I was 16 then again iny 20ies.i still this day don't know what happened I took many hormone pills pain pills birthcontrols Marina operations now I'm.kinda normal but I'm.scared it will happen again
I also have Von Willebrands disease I have had nose bleeds since a baby, having ops to try to stop them. I bruised very easily, heavy periods and heavy bleeds after operations and giving birth. Had many unnecessary operation to try to stop the bleeds. When 45 years old I was diagnosed after my hysterectomy which I blead for 10 days after my op before bursting my stitches. Since then I have received treatment for my Von Willebrands which seems to be under control. If I need an op now I have my injection before and I am ok. I am now 71 years old. I am looked after by the haemophilia unit at my main hospital in Birmingham England for which I am very grateful.
Try Roobios Tea. It worked like a miracle.
please also google ehlers danlos syndrome as you look like you may also have some signs/symptoms of that as well. congrats on getting this mystery solved and not giving up
I have been in the same boat. I have would bleed everyday for years. Having to have transfusions and iron fusions. We had a little boy 2 yrs ago. Had no clue we were pregnant untill 1/2 way through. We did an ablation and a ton other things. Finally this past July I had a hysterectomy. I feel a ton better.. but im 41 with 3 kids. So i was ok with that decision.. i would have loved to have one more. My lowest BC was 4.2 and my Iron was a 4.
Happy to see that your finally getting the help you needed and it's fantastic that you've reached thousands of women across the World and are starting to help them. All the best. Hope to see you in Melbourne next year. Brett
I have been in your shoes for the last 2 years (3 in march) and my problem started after having the birth control implant in my arm. I had it removed 3 months ago and the bleeding still hasnt stopped and every doctor i see has just brushed it off. And i literally can not affored anymore doctor visits smh. I am glad u found out what was causing urs and that u found a way to stop it from happening. I can only pray im so luck one day
I am on month 3 it isn't pleasent and doctors just keep me waiting... I hope you get the help you need
Thank you for this information! At last we have found somebody who can give light to this kind of ailment. After many years of in and out of the hospital due to non stop bleeding, my daughter is diagnosed with VON Willybrant lately. I thought she is the only one with this sickness that;s why I am desperately looking for ways to remedy the ailment. Seems her doctor gave up on her and also my daughter is tired of taking lots of medicines that are synthetic. At the moment we resorted to homeopathy. Her bleeding is at least minimal due to her herbal treatment by her homeopath Doctor. Since the treatment doesn't totally stop her bleeding I won't stop looking for other means if only to normalize her life. We need help on this case. Thanks!
I have been on my period for a year none stop they have put me on pills and the depo shots.. and nothing seems to work.. they say they don't know what's causing it.. and they just give me the same things but they don't really seem to put much attention to it..
Thank you for this! I am a mother of two boys with hemophilia A. I also have it and wasn't aware until my boys were dx. It is overlooked time and time again in women because it is considered a male disease. Good for you!
Good for you! One of my five sons has Hemophilia A mild to moderate, he us 39 y/o and was diagnosed at 2. SORRY you had to suffer so long!
My friend has this and she is struggling her period lasts up to a month sometimes longer with only a week in between but she has been to jail and is having so much trouble getting a diagnoses being consistently written off im not sure she even accepts theirs something wrong any more its been going on so long she's just changed her entire life to live with it.
My daughter was diagnosed with von-Wallibran about 6 years ago when she was in high school. She struggles daily with this and her never ending menstrual cycle. They had her on a birth control pills that was 90 days. That worked for years but currently is not and she is on day 50 of her cycle.
I am undiagnosed and feel unheard --> brushed off by doctors in regards with my period. Instead, I have taken it upon myself to eat quite clean, and exercise. It has helped, but hasn't cured my daily ailments. I currently have iron deficiency anemia. My period has lasted from 6 months straight (years ago), to 5-7 days every 21-28 days. Cramps kill me 2-3 days a month. I've bought the diva cup, but I still change it constantly. Up to 7 times in a day for the first day or two. My doctor has mentioned this is normal. I beg to differ. My blood tests are normal. I believe this is because I choose to healthily supplement myself accordingly. Basically, the symptoms are being treated. I don't know what else to do. I've seen several doctors who disregard my concerns. What gives?
I have something similar Chronic immune thrombocytopenia purpura I have terrible periods random bleeds Severe bruising I bleed like a wounded buffalo! I know it's not easy but once you find the right specialist who understand and wants to help life gets easier!
My daughter has the disease to and now I have to get my other kids and myself tested wish lots of luck and blessing.
I also have vonWilliebrand's disorder. I was not diagnosed until after surgery for severe (12 -14 hours was normal) nosebleeds. I also suffered with a continuous period, but was never taken seriously. Eventually I just dealt with it. A Dr finally took me serious after surgery to stop the nosebleeds, and I bleed for 4 hrs in his office. On the up side, I am now 48 yes old, have given birth to a wonderful son that does not show signs of any bleeding disorder. Don't let anyone tell you can't have everything - including children. God bless.
I was diagnosed at three years old and can totally relate.
I have to Thank you again for wanting to bring awareness to this disorder. Since introducing you to my sister all she does is talk about how your page has been helping her.