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Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: May 26 7:04am | Replies (251)

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Hi angelasmom,thanks for sharing with me what you've gone through I know it's not easy to live with LV. I've had LV about 6 years but was just diagnosed a year ago. Back in December 2011 I was hospitalized because I had a mega flare up! It was so bad that I got gangrene I had 3 really big ulcers the size of baseballs and I could not walk because of the pain and swelling.Thank God for a Dr. Named Dr. Marc Hare, he works at the center for wound healing and hyperbaric medicine,he went to see me at the hospital. I go to see him once a week for the ulcers and he diagnosed the LV, I also see a hematologist every 2 weeks to check my inr as I am on caumadin. In the beginning I was seeing a vein doctor and had some surgery done but as you said this disease has no cute yet, only the symptoms are delt with not the problem.i pray one day we may be cured of this disease, at the moment I am also in remission, oh and I also had skin grafts put on my ankles.

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Replies to "Hi angelasmom,thanks for sharing with me what you've gone through I know it's not easy to..."

Hi Alejandro. I read your post above and hope you are still here and doing well. My ulcers on my feet and ankles also get to the same size as yours. I had not seen anyone else with them this big so wanted to reach out and say hello.
I don't post photos as they are pretty gross and not everyone can handle them. I was misdiagnosed for years...could be 8 or more and it was hell. I don't need to tell you how that is when your foot can't even bend and just walking is difficult.
I know there is no cure, but here at the Mayo Clinic they seem to at least look at other ideas or try new things for us.
I live in Canada and so far only have found one other on the other side of the country. We are small but vast between large cities and other provinces. Like a state if you are in the US.
Would love to hear from you and if you are doing okay etc. I am in another nasty outbreak which has now lasted over 21/2yrs. The pain is the hardest to deal with.
Sending a virtual hug your way because when you have something like this we all need one.
Merry C7