Need some information from others living with Lipodermatosclerosis

Posted by suemer @suemer, Mar 9 10:30am

I am not sure if this is the correct support group for my issue? This is a chronic inflammation and fibrosis of the skin. I don't know where to go for the best help. And I'm looking for a physician that has had experience with this disease. Any direction or help would be appreciated.

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suemer | @suemer | Mar 9 10:38am

I need help finding a doctor that has dealt with this disease. I live about 4 hours away. My local dermatologist has no patients with this. And I'm trying to find out if I need a dermatologist or a vascular doctor. I've ben told it is rare that I have this. I am 5'2" and weigh about 106 lbs. I have no heart disease. Can anyone advise me?

Colleen Young, Connect Director | @colleenyoung | Mar 11 2:28pm

In reply to @suemer "I need help finding a doctor that has dealt with this disease. I live about 4..." + (show)

Hi @suemer, it is so frightening to get a new diagnosis. As you are learning, lipodermatosclerosis refers to changes in the skin of the lower legs. It is a form of panniculitis (inflammation of the layer of fat under the skin).

I'm tagging fellow members like @pixiejacq and @triveraderubio, who also have experience with lipodermatosclerosis

You will likely start by seeing a knowledgeable dermatologist. Dr. Alison Bruce and colleagues at Mayo Clinic specialize in lipodermatosclerosis
- Lipodermatosclerosis: review of cases evaluated at Mayo Clinic https://pubmed.ncbi.nlm.nih.gov/11807428/

You mention that you "live about 4 hours away." Did you mean 4 hours away from Mayo Clinic? Would getting an assessment and second opinion at Mayo Clinic be an option for you?

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