Quantcast

Von Willebrand Disease (VWD) - Online Support Group

Symptoms if VWB

Hello,
I’m newly diagnosed with VWD and am have little support from GP. I’m experiencing shortness of breath, fast heart beat and red/purlple coloured feet and legs. Any advice would be so grateful x

Hi! Welcome to the group. I don’t know about the heart beat and foot/leg issues but it sounds like something you should definitely have checked further. For me, the shortness of breath is because my iron levels are too low so my body can’t carry oxygen fast enough (iron binds to the oxygen in your body). I have to get regular iron infusions which involves getting iron directly into your blood stream through an IV. Iron pills don’t work well or fast enough for me. After an infusion I feel like I can run a marathon, where as before I am huffing and puffing just walking down the street! I don’t know if this is what you may need but it is worth investigating with a hematologist probably not your GP as they aren’t experienced enough with VWD. I hope you find the answers.

Thank you so much for the reply. I’ve suffered from anemia for a long time and the tablets only seem to work for a short period of time. Also I have a bowel condition which makes taking large doses of iron extremely painful as it makes me constipated. My Gp is no help for me at all so I’m just hoping the blood clinic will help more. Could iron infusions be something I could request and do you find yourself constipated with them. Sorry for the personal question x

I don’t have VWB (I’m a fairly new moderator for Ben’s Friends Communities in general, the rare disease I have is chronic facial pain, in my case trigeminal neuralgia) but I was chronically anemic for 15 years so your old question about rapid heart beat caught my attention. My red blood cells are naturally undersized, which often creates anemia.

That minor intro out of the way… I suffered from a very rapid heart beat with anemia for years and my even now with a red blood cell count / iron level that is low normal my resting heart beat is in the 90s. I’ve been told it’s because the actual volume blood is lower when anemic or when red blood cells are undersized so then the heart beats faster to pump it through the system. The pressure of your blood moving through your heart chambers isn’t optimal, creating a faster heart beat.

Password – have you looked into iron injections? Or vit D injections? those often help with anemia but are more gentle on your bowels. Also, be aware that zinc and manganese may interfere with iron absorption so you will want to avoid products like Cold Eeze as it’s a super high dose of zinc!

azurelle

Thank you so much for your reply. This is all so complexed and not having the support from the GP is extremely frustrating as I feel I’m going mad. My depression is bad at the moment and that’s probably due to the anemia. I finally have hospital next week so I’ll be requesting iron infusions instead.
I hope your pain is manageable with your condition?
Thank you for the support.

Seenie from Modsupport, here, Password. I’m azurelle’s colleague. I just noticed this comment that you made. Azurelle and I work all over Ben’s Friends ([30-some communities)]http://www.bensfriends.org/community-list/) and this is a sentiment we hear often. REALLY often. The thing is that your GP really don’t know a whole lot about VWD, or any other rare disease for that matter. I’d hope that s/he’d learn about it to help support you, but the fact is that those of us with rare diseases need to learn as much as we can about our condition, and be a strong advocate for themselves. Of course the problem is that it’s hard to do that: first of all you are not well, and secondly, you probably don’t have a background in medical science. Still, it’s important to learn as much as possible, and this is a great place to start!

Welcome to the community, PW. We’re glad that you found us, and I hope that you will be as well.

Seenie from ModeratorSupport

Thank you greatly for your support it’s refreshing to have a service like this to help us. I’ve been amazed by the quick responses from people who truly care. Thank you all.