I Have Blue Rubber Bleb Nevus

A Blue Rubber Bleb Nevus anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Blue Rubber Bleb Nevus. You're not alone. 33 People

    My Son's Brbns Treatment With Sirolimus

    hello friends I joined this site before as rattri55 but forgot my password and now i am joining it as rattri555.If you want to read whole story please go to rattri55.After vincristine my son's bleeding did not stop.We went to our doctors and they suggested argon plasma...
    rattri555 rattri555
    36-40, M
    6 Responses Jul 28, 2012

    Blue Rubber Bleb Nevus Syndrome

    Im 35 and have brbns, have had countless tests blood transfusions and bowel surgeries, I have them in my g.i tract, liver, neck, various limbs, they suspect I may have micro ones throughout my head, I'm always sick it seems, constant headaches and obvious digestive problems...
    Raspkb Raspkb
    31-35, M
    3 Responses Dec 8, 2010


    I 23, i have BRBNS on my arm mainly, and a few blebs on my backside and chest, and have only recently in the last month found out what it is threw getting in contact with one half of my biological family for the first time. i have multiple small clustered blebs on my arm about...
    gotquestions gotquestions
    1 Response Mar 7, 2011

    My Son Has Brbns And A Big One At Right Foot

    I am father of 11 year old son. He was diagnosed with a big hemangioma of right foot and multiple hemangiomas all over his body eghands,arms,legs,feet,tongue,abdomen,head etc. At age three his foot  was operated upon but that surgery was not successful. After that surgery his...
    rattri55 rattri55
    2 Responses May 19, 2011

    My Daughter Has Brbns

    Hi. My daughter age 12 has blue rubber bleb nevus syndrome. She was born with a large vascular malformation on the rear of her left thigh. She had major surgery to remove most of it at age 3. She wasn't diagnosed until age 5. We started realising she was bleeding internally...
    Mummyc7 Mummyc7
    36-40, F
    6 Responses Jun 7, 2012

    Brbn In Richmond Va, Usa

    My son was born with BRBN, he is now 17 years old and a paraplegic. He has a large lesion in his chest and spine that eroded his spinal cord. We have started a Facebook page. Hope you will connect with us there. I'm interested to learn more about treatments and medications...
    Sharon1231 Sharon1231
    2 Responses Aug 16, 2012

    My son is 17 and has Blue Rubber.

    He was born with a huge malformation on his right leg. They saw it in utero on my five month sonogram. They did surgery at one week which was a mistake. Just came back. Finally threatened to suit his HMO and doctors if they did not take action. He could have lost his leg...
    laurieeileen laurieeileen
    61-65, F
    Mar 5, 2014

    My 6 years old daugther was diagnosed with the

    BRBNS two years ago. We have been treating her since them and she has been mostly stable. Recently she suffered a fast decay on her blood levels, but we could not identify the cause. The doctors are now talking about a new treatment with Sirolimus. I would like to hear from...
    xofrd xofrd
    51-55, M
    Aug 17, 2015

    I Have Blue Rubber Bleb Nevus

    im 23, I have BRBNS on my arm mainly, and a few blebs on my backside and chest, and have only recently in the last month found out what it is threw getting in contact with one half of my biological family for the first time. i have multiple small clustered blebs on my arm about...
    gotquestions gotquestions
    2 Responses Mar 7, 2011

    My Daughter

    My 7 year old daughter was diagnosed with brb at age 4 in Boston children's hospital. She has a major surgery on her left arm coming up and I'm scared to death. I have only met one person with this disease and he has a trach and is in a wheelchair because of the disease. This...
    Bugzybu Bugzybu
    3 Responses Sep 24, 2012

    I'm a 31 year old female,

    diagnosed as a baby with brbns. Have been treated in Dallas Texas with dr john Anderson, the mayo clinic and in New York with dr Robert Rosen. I had internal bleeding during teen years and since treatment have lived almost normally. I have a more mild case. I have been suffering...
    vwgirl007 vwgirl007
    31-35, M
    Jan 4, 2015

    Diagnosed This Summer

    I was diagnosed this summer with BRBNS. I am a 33 year old male. Recently when I went to donate blood, they said my hemoglobin was too low. I went to the clinic to have a full blood work up done. My hemoglobin was 11.8 and my ferritn was at 4. I guess that means I have...
    harrylarry harrylarry
    31-35, M
    2 Responses Nov 30, 2009

    My Two Year Old Son Has Brbn

     I'm a mom of a two year old boy from philippines who has this kind of rare disorder, he was diagnosed when he was just 10 mos. old, it was a heartbreaking moment , it was his first time he went through blood transfusion, from then on, his hemoglobin kept on going down...
    mjraik mjraik
    36-40, F
    4 Responses Nov 7, 2009

    I Too Have Blue Rubber Bleb Nevus

    BRBNS is for life, unfortunately for those of us who suffer from the condition, it means we have a long fight on our hands.  My experiences with the treatment of my condition are occasionally cringe worthy, but i have been looking for a long time for any support groups and...
    Rosi1e Rosi1e
    26-30, F
    9 Responses Oct 29, 2009

    Jonovan Angel's Blue Rubber Bleb

    My son is a happy 3 and a half year old little boy with a mild case of Blue Rubber Bleb. He was diagnosed at around a year and a half by the specials at the University of Miami hospital. He is seeing a gastroenterologist and a dermatologist and I am currently seeking more...
    AngelsMommy121 AngelsMommy121
    22-25, F
    Sep 14, 2012

    Here We Go Again!!!!

    I was born with Blue Rubber Bleb Nevus Syndrome and it continues to make its presence known in my life.  Over the past few days I began to feel a lump in my throat and I went to the emergency room today and had xrays done only to confirm what I already knew.  I was so...
    naisha naisha
    4 Responses Apr 7, 2009

    Hello, my name is Mark,

    I'm 33 from Louisville, Kentucky. I was diagnosed with Blue Rubber Bleb Nevus Syndrome at the age of 30. Growing up the doctors always thought it was hemangiomas, it wasn't until I went to the dermatologist, he done test and determined that it was BRBNS. I have about 20 blebs...
    Beamish1912 Beamish1912
    36-40, M
    Jan 26, 2014

    I Dont Know What To Do!

    Hello, glad to of found this website. I am 19 years old from the Washington D.C. area and have had these blue dots since I was little. I have yet to find a doctor to diagnose me with BRBNS but these malformations are literally growing every where on my body. Biggest ones are on...
    jp3401 jp3401
    22-25, M
    2 Responses Oct 28, 2013
More Stories