She has been investigated with ultrasounds and there are no polyps or any structural abnormalities. Just VWD.
She takes iron supplements and is also on the pill and tranexamic acid for the first three days of her period. On average her period is going for 22-24 days and is very heavy. She then usually has about 5 glorious days break before it starts all over again. Yes....only a 5 day break!
Having read all of the wonderful posts on this site, we are going back to her specialist and I am putting my foot down to get better management for her symptoms. I think iron transfusions are the way to go too.
Hang in there everyone else! Thanks for sharing your stories. We needed to hear them!
Happy to let you share our story Johntheelder! We are sharing them to help others too. The more people that know the better, especially if the message is getting out to the medical and health professionals.
onemom said:
I that's a great idea and I would gladly give my consent to any reputable medical journal. This discussion has proven what many of us already know. No Doctors or even Hematologists know how to handle this and it needs to stop being ignored!
Johntheelder said:
GM to all,
This has been one of the best discussions on this site. You all know lots of issues that bear on this subject, both medically and emotionally and you share them along with your approaches to this seemingly intractable problem. That is what this site is all about and you are making it work.
From medical approaches, physical exercise, technical explanations about pain, surgical solutions, ovulation and clotting consequences, drug side-effects and proper approaches to drug administration and supervision, each of you has provided experience that needs to be expressed, generally, to the medical profession in a single message underlining the broad spectrum approach the Doctor needs to take. A larger frame of reference for the Doctor's decision making progress is clearly needed.
I am going to find out how to get this info published as a guest editorial or lengthy letter to the editor in major Hematology professional journals. I think, with suitable anonymity precautions, a description of what the "front line" looks and feels like to the involved families would be a worthy effort to help the medical profession see the whole picture more clearly. I'll bet LANCET, JAMA , NEJM and other more specialized Hematology journals just might publish a collection of personal anecdotal experiences, including some of the professional practices that need to be changed. We VWD patients are not lone individuals on desert islands suffering in isolation. As a group we can effect change that will benefit our families.
Give me some feedback if you think this is a worthy cause and if you have any suggestions to improve on my sketchy idea presented above!
Thanks roseHI. She has school nurses and they, along with all her teachers, have all been informed about VWD. We have previously just had some drama from a couple of teachers about how often she has needed to leave part way through a class. Once she was even told she could not leave until the end of the lesson! This has been so humiliating and embarrassing for her and sometimes her teachers have even discussed this in front of others students in class (!!!). That teacher got quite a serve from me! This year I finally decided to "over inform" each of her teachers of her symptoms via email. I also told them that under no circumstances was she to be denied the right to go to the bathroom and that they may never discuss it with her in front of others. So far, so good! As parents, we need to advocate for our kids all the time.
roseHI said:
I used to work for the school system here in Hawaii and we had school nurses assigned to each complex. They regularly meet with the school health aides at each school and can provide pertinent information to school staff re: students with special health needs. For instance, if there is a diabetic child or a child with severe allergies. I would check with the school to find out if there is any such resource available to your child's school and if so, see if you can meet with them to describe what problems have arisen and ask if they can work with the staff at your child's school. They will need permission to speak with your child's doctor but it helps to have a health professional who understands the situation and can advocate for appropriate educational modifications for your child when needed.
May said:
My daughter has VWD II and is currently taking birth control pills 2 times a day to prevent the period from coming in. I do not like her taking the pills but it allows her to have a better quality of life. Her last period was about a year ago and it was too much blood loss for both of us to deal with despite aggressive humate p infusions. You may want to consider discussing birth control pill option with her hematologist. I would also encourage you to talk to the school principal about her medical needs as well. Be persistent and get their attention. I know some treatment centers would send a nurse or social worker to school to help educating others. Over the years, I have learned to "Plan for the worst and hope for the best". If she is fainting at school and falling asleep from blood loss, it's a serious concern. Good luck and I hope things improve for both of you soon.
I am currently looking at one journal for Cancer Clinicians which has a place to register and submit articles. The particular Journal is the most cited in other Journals. Since, at least in the USA, oncology treatment centers are where Hematologists hang out it might be a good choice for an article explaining the frustrations that VWD patients face when dealing with the profession and how the profession deals with the families… something that is not always taken seriously as this condition is always a family affair. I will get back here with a draft for all of you to see and comment before I submit it. Tell me about any Journals you know that might be appropriate.
With regard to the iron infusion issue, there is more than one product that will raise the ferritin levels so if an allergy develops there can be a “Plan B”. I was told that the human system regards Iron as a toxin and that is why your diet can be iron-rich and your iron levels low. Like clotting versus bleeding, the body sets a mid-point and some of us have a “set-point” too low to make up for loss rate. I get periodic Iron Panels to keep track of my iron levels and occasional “top-ups”.
Personally, I can’t take iron supplements because I bleed from the stomach and intestines when an AVM breaks. If I take iron pills my stool will be black and when I test for blood in the stool (Hemocult test), I will get a false positive. (BTW you can have your own hemocult test kit on Amazon or E-Bay). AVMs are arteriole-venous malformations where arteries connect directly to veins and are prone to breakage.
Regarding mental health issues, go for help!! I take several meds to control anxiety and depression. My worst bleeds occurred during the time we lost our second child. Anybody who faces bleeding issues like us will have anxiety along with the bleeding and Mental Health people can help deal with that either with talk therapy, medicine or both. I am much better off for taking the meds which just manage to smooth some of the rocks and hard-places I find my self in.
It is wonderful you are willing to write an article and submit it to a journal! On behalf of all VWD patients, thank you for taking the time to be an advocate for us. I think it is a terrific idea to target an oncology journal. Being from a relatively small metropolitan area, one of my biggest frustrations is that I can't find a hematologist who specializes in VWD, because really, their specialty is oncology. I have even argued with appointment setters who keep telling me that all the doctor's in the office treat VWD. Of course they can all treat it, but who really knows a lot about it? I bet if I called with a specific type of cancer, they would know immediately which doctor I should see! Both hematologists I have seen (the first diagnosed me with the wrong type) admitted to me they rarely see VWD and have to refer to text books to remind themselves of the details. By targeting an oncology journal, at least you are reaching the correct doctors, helping to educate them, presenting many treatment options, and giving them a view into the life of a VWD patient.
To the parents of these young women losing serious amounts of blood over several days with extremely low iron, keep looking for a doctor who specializes in VWD! Travel out of state if you have to. From what I've found in my research, the best doctors for VWD are in Wisconsin. My pediatric hematologist's office also knows this and started sending my daughter's blood there (which is so low the labs here can't measure it). We had genetic testing done on our whole family (paid for by our insurance) and all our blood was sent there. Your doctor can email with these doctors and get answers and help (that's what my daughter's doctor did). These cases (young women being discussed on this board) sound as serious as Dr. vonWillebrand's initial long term study patient who died (I don't mean to be alarming, but this is true), during her second period. Everyone's read the few books that are available, that tell about him initially discovering VWD, correct? If not, they are very informative.
Thank you for the encouragement and the references.
Thinking about how to organize the main ideas presented by all of you in a cohesive and readable manner is a challenge. Instead of “Collateral Effects of Long-lasting Menses and Emotional Stability and Lifestyle Expectations”, I am leaning towards “Help, Doctor, My Daughter Has VWD and Its Ruining Our Lives”. I really could use some help here because my background is Geochemistry not Gynecology, even though I am married and have a daughter as well as being a retired teacher in a Public High School who was aware of why some of the girls tended to wear a sweater backwards with the sleeves tied around the waist from time to time. (which, BTW, might be something a teacher might recognize if they were told and thus avoid the Hall Pass issue quietly).
I will list “Living with VWD.org” as a co-author if I get the Ben,s Friends leadership approval.
The target Journal is “A Cancer Journal for Clinicians”. Check it out and give me feedback.
I am glad that the school nurses have been helpful. However, for those of you who have not found support from school staff, I would suggest you talk to your child's school counselor re: Chapter 53 accommodations (under Section 504 of the Rehabilitation Act of 1973). If your child is determined to have a "disability" which impacts on learning, a written plan needs to be developed and school staff are required to provide the modifications/accommodations on that plan. I would think it would take the onus off of parents having to persuade school staff to do so. If there is a learning disability association in your area, I would talk with them if the school tries to brush you off. They can advise you about how to proceed. Reading about your experiences has been eye-opening and I hope this can help those of you who are not finding schools to be supportive of your child's needs.
di said:
Thanks roseHI. She has school nurses and they, along with all her teachers, have all been informed about VWD. We have previously just had some drama from a couple of teachers about how often she has needed to leave part way through a class. Once she was even told she could not leave until the end of the lesson! This has been so humiliating and embarrassing for her and sometimes her teachers have even discussed this in front of others students in class (!!!). That teacher got quite a serve from me! This year I finally decided to "over inform" each of her teachers of her symptoms via email. I also told them that under no circumstances was she to be denied the right to go to the bathroom and that they may never discuss it with her in front of others. So far, so good! As parents, we need to advocate for our kids all the time.
roseHI said:
I used to work for the school system here in Hawaii and we had school nurses assigned to each complex. They regularly meet with the school health aides at each school and can provide pertinent information to school staff re: students with special health needs. For instance, if there is a diabetic child or a child with severe allergies. I would check with the school to find out if there is any such resource available to your child's school and if so, see if you can meet with them to describe what problems have arisen and ask if they can work with the staff at your child's school. They will need permission to speak with your child's doctor but it helps to have a health professional who understands the situation and can advocate for appropriate educational modifications for your child when needed.
May said:
My daughter has VWD II and is currently taking birth control pills 2 times a day to prevent the period from coming in. I do not like her taking the pills but it allows her to have a better quality of life. Her last period was about a year ago and it was too much blood loss for both of us to deal with despite aggressive humate p infusions. You may want to consider discussing birth control pill option with her hematologist. I would also encourage you to talk to the school principal about her medical needs as well. Be persistent and get their attention. I know some treatment centers would send a nurse or social worker to school to help educating others. Over the years, I have learned to "Plan for the worst and hope for the best". If she is fainting at school and falling asleep from blood loss, it's a serious concern. Good luck and I hope things improve for both of you soon.