My recent diagnosis of Von Willebrand disease came as a surprise to me and my family. However, it certainly does answer questions we have been posing to the doctors for at least 5 years now. The constant hour long nosebleeds, the 7-12 day unmanageable periods, the tiredness, anemia, and constant bruising. We have asked everyone in the family and no one seems to know if they have it, but we realize that it is something specific you need to test for. Since my diagnosis Is so recent, the appointment I gave this week with my hematologist will result in my treatment plan. I hope that this treatment will also help with my constant tiredness. Since I am 18 years old, please tell me if this is common. I feel like I am older than I should be because I cannot keep up with others my age. Also, can anyone please give some pointers to feel more alive!
Brace for impact cause having VWD is hard..... but when you get started on your treatment plan things will get better, or at least much more stable. When I have hour long nose bleeds it takes a lot out of me and will take a few days before I start feeling normal again. It a mixture of blood lose and emotional stress that causes it. Give it time and you will start to feel better. That anemia will also cause you to be very tired so keep your hematologist updated on your condition. Keep in mind that having VWD is a roller coaster of emotions but stay focused.
Hi Bern! Anemia will definitely tire you out. I find that along with my treatment plan - a good diet filled with iron enriched foods along with some physical activity helps to perk me up. It’s tough getting motivated when you feel so drained though, but once you get started – your energy slowly comes back. I do recommend finding a physical activity that you love in order to help motivate you – whether it be running, dancing, swimming...etc. Take it easy at first and don’t force yourself into something you don’t really like cause you feel you have to, you’ll never do it. For me it’s hiking or walking with some really awesome music. With two little kids it’s probably the only “me time” I get, so I make sure I listen to music that my kids don’t like to hear in the car - haha. A 30 minute walk a day goes a long way! At 18, just walking may not be as exciting to you - however, when I was younger I’d go hiking and exploring with friends. Sports are a little more limited for VWD folks, but there are plenty out there that don’t put you in danger of concussions and keep you active. For iron enriched foods – it took me awhile to like oysters, clams, and mussels – and they are all pretty high in iron, but now I love them! There are plenty of websites that provide lists of high Iron foods. I try to incorporate some of them with every meal (except liver – I still haven’t given it to that). Good Luck!
Hi,Bern! Welcome! I’m sure your VWD diagnosis came as both a relief because suddenly everything you were experiencing made sense and a bit of a worry for what it entails. Once your hematologist gets you on a treatment that works for you, you will start to feel better. Not much else to say that others haven’t already. Like they said try to keep active and do your best with your diet and supplements to keep your iron levels up and you will find your energy will improve. Your true friends will understand when you are feeling a little slow.