Is there anyone else on here with Blue Rubber Bleb Syndrome? I have one near my left knee, one on my left big toe, and one on my left middle toe. My two paraspinal lesions may also be a part of this.
Hello, Helena, you may in fact be our first member with BRBNS. It's pretty rare, as I'm sure you have learned. I'll share your discussion, in case we have other members.
Where are you being seen? Has your doctor treated other BRBNS patients? Has your GI tract been thoroughly screened?
I do not currently have a doctor that is treating it. I can contact The Boston’s Children Clinic. Oschner Hospital and Walter Reed Medical when it was Bethesda diagnosed me with it. I do not have GI involvement yet but it can appear at anytime. I had a colonscopy and EGD that just showed a benign polyp on both.
Bethesda is near my old stomping grounds. I lived in Silver Spring for 12 years. I would suggest consulting with Mollie Meek at UAMS (https://www.youtube.com/watch?v=rpkq9lFbd34), Patricia Burrows at WI Children's (I'm guessing she may also see adults), or Denise Adams in Cincinnati.
UAMS may make good sense, given your location. I drove through TN for the first time when we took my son down to UAMS for his surgery. What a beautiful state.
Thanks. I will research those places.