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Livedoid vasculopathy
Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
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Hi Tina, Do you have Lividoid vasculitis and lividoid vasculopathy also? Zenk
Funny.. my derm doctor sys its vasculopothy, but my primary says vasculitis, so who knows.
Hi Tina, The reason I ask about Vasculopathy and Vasculitis is because they are each treated quite differently. I was diagnosed with a punch biopsy by a dermatologist , after ruling out Vasculitis by my rheumatologist. I just have Lividoid Vasculopathy. which is a vascular illness of the very small vessels in and around my wounds. If I had Vasculitis , I would have been treated by my rheumatologist with anti-inflammatory medications. Zenk
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2 ReactionsZenk, I was diagnosed with vasculopathynafter 3 biopsies.. but my primary care doctor says different and I dont have a rheumatologist.. I am from Ct an this disease is so rare, no one knows how to treat it, so sadly I have been suffering for some time.
Hi Tina, If you definitively by biopsie have lividoid vasculopathy not Vasculitis, research seems to indicate that it is best treated with blood thinner. Your primary care doc could google lividoid vasculopathy and see the articles that show these results. The one done in Germany is the best one. Zenk
Hello ...I am writing on behalf of my 44 year old daughter who has been battling L V with atrophie blanche for several years. It is getting progressively worse. She is trying to continue working at her business (she runs her own hair salon) but it is getting harder and harder. I am trying to help out by researching new avenues. My heart is breaking not only for my daughter but for all of you who are suffering so with with this enigmatic disease. You are all in my prayers for continued strength and courage. What I am puzzled about is that my daughter's vascular physician (Kaiser in California) is now insisting that she undergo a procedure called endovenous ablation. I have found some medical journals that address its use for LV but can't find any posts anywhere from people who have actually undergone this treatment. Has anyone else heard of this or had any luck with it? Thank you in advance for any light you can shine in our tunnel.
Hi Logansnana, Go to Team Inspire and look for Lividoid vasculopathy . Lots of good info there. They saved my life. Zenk
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Hi akshayv, I'm a little confused as to what this has to do with LV. My daughter cannot wear anything but flip flop type shoes with her LV. These shoes do look comfy thought. Thank you.
Logansnana, Did your daughter get any help with her LV. ? Would like to know what the doctors are telling you and her. Zenk