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Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: Nov 3, 2023 | Replies (247)
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@logansnana

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.

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Replies to "Hello ...I am writing on behalf of my 44 year old daughter who has been battling..."
zenk | @zenk | May 30, 2018

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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zenk | @zenk | Jun 23, 2018

Logansnana, Did your daughter get any help with her LV. ? Would like to know what the doctors are telling you and her. Zenk

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msmerry | @msmerry | Oct 13, 2018

My hat is off to your daughter as I too was a hairdresser with my own business and I had to stop as the pain was too much when standing all day. (One thing they did say later, was standing still or sitting for too long is not good.) I have not heard of this endovenous ablation. Is that similar to having your veins stripped? If that is the case, a surgeon here did that the first time this happened to me after two other failed attempts. It did help but only for a short time...a couple of years for sure. I also had no idea and neither did they of what I was actually dealing with as the diagnosis came later. I am in Canada and we don't have nearly the same amount of information and help as in the US and a few other countries have. Right now I am the only person where I live with this so relying on any help I can get from wonderful people like here.

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