An unexpected kneecap dislocation revives concerns about bleeding

Managing bleeding disorders and Ehlers-Danlos syndrome can be challenging

Jennifer Lynne avatar

by Jennifer Lynne |

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I’d enjoyed several months without any bleeding problems until I experienced an unexpected ankle bleed last week. The elevator at my condo was out of service, so I had to climb four flights of stairs multiple times a day, which put additional strain on my joints. Just when I thought things couldn’t get any worse, I started having issues with my knee.

I was diagnosed with Ehlers-Danlos syndrome (EDS) as a teenager. My hematologist, who’d previously diagnosed me with von Willebrand disease (VWD) and hemophilia B, explained EDS as a connective tissue disorder that made my joints hypermobile.

While hypermobility may offer unique advantages for gymnasts and ballet dancers, EDS presents many challenges, including frequent joint dislocations.

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During my teenage years, my kneecap often dislocated. I underwent two surgeries, and eventually, it stopped popping out of place. I’ve learned to navigate life with EDS and bleeding disorders by avoiding activities like tennis that could strain my joints.

As an adult, I’ve experienced little trouble with EDS other than hernias and an odd finger dislocation while making a bed. I’ve learned to protect my joints and adapt my lifestyle accordingly.

A familiar sensation

On Sunday, all of that changed. While sitting sideways on my recliner, my kneecap suddenly slid out of its track as I moved my leg. Although familiar, the feeling caught me off guard. Then, just as swiftly, it popped back into place. I hadn’t felt this sensation in over 30 years, yet I knew exactly what was happening.

To say I freaked out is an understatement. The mere thought of reliving that unsettling dislocation without warning fills me with dread. I don’t want the bleeding problems that come along with joint dislocations. Looking back, I recall the distressing times when my knee needed draining because of bleeding and swelling.

I’m not the only person who’s been diagnosed with VWD and EDS. Research has even established a connection between EDS and bleeding problems. My diagnoses are a trifecta of bleeding disorders. As a hematologist once told me, I’m lucky I don’t have more problems.

I’m trying to adopt a positive attitude. Treatment has come a long way since my teenage years, and I feel like I can address bleeding issues should they arise. I’m good at the RICE method, which stands for rest, ice, compression, and elevation. I have medications on hand to infuse into a vein if needed. To help put my mind at ease, I’ll talk with an orthopedic surgeon next week about how to protect my knee and prevent another dislocation.

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


Francdes Rothwell avatar

Francdes Rothwell

1My father had the same and he was always lame, and wlked with a stick. I am a carrier of haemophilia B factor ix 28%. I have \ pinched nerve in my spine, which is horrifically painfuland my doctor has suggested surgery next.. I had a painkilling injection which did not work55

w55ould you have surgery?6

Jennifer Lynne avatar

Jennifer Lynne

Hi Francdes - thank you for your comment! I am sorry to hear of your troubles with your spine and of your father's troubles. Surgery with any bleeding disorder can be an ordeal. But the good news is, knowing you are a carrier for hemophilia b, you can receive treatment and hopefully will not have any issues. I hope you have a good hematologist on board.

To answer your question, I do not regret having the knee surgeries I had in my teens. The first surgery did not help at all, but the second has kept my kneecap in place and relatively pain free for over 30 years.

I wish you all the best.


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