P-ANCA UPPER ABDOMINAL VASCULAR CANCER HELP NEEDED
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We have a subscriber that needs medical help. Bridget, who has been diagnosed with P-ANCA UPPER ABDOMINAL VASCULAR CANCER in 2 area of the upper abdomen. The prognosis is around 127months (unless treated correctly) with no cure or available surgery (because it’s vascular) and the symptoms are devastating. She has been on a form of Chemotherapy that has caused hair loss, continual nausea, swelling of the abdomen, severe weight loss and much more. She currently has a large mass in the left upper abdomen (approx. the size of a large grapefruit) and a smaller mass on the right side (approx. the size of an egg) that are interfering with arterial blood flow as well as problems like, mocking the symptoms of Type 2 diabetes & it’s effects, acute giant cell immunodeficiency, as her white blood cells are fighting her red blood cells leaving her no way to battle infections, and complications with normal daily actions such as exercise, lifting/hugging her grand babies, food intake & passage of food, etc.
So, if not treated immediately and properly, she will begin to lose organs and/or appendages from the breasts down. The disease she battles with daily, is extremely rare and excruciatingly painful, along with the foreboding fact that the vascular area could hemorrhage, this limits her from leaving her bedroom and home, with the exception of doctor’s appointments and ER visits.
We are asking you to help her afford treatments, travel, rental car, co-pays, lodging, etc. at any of these... The Mayo Clinic, the Cleveland Clinic, Johns Hopkins, or another of the major experimental centers so that she can find a Doctor and team with the appropriate skill sets to help her receive remission. The three Doctors she’s presently seeing have suggested one of the above hospitals/clinics.
Here is a bit more about ANCA:
Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis comprises three different syndromes — granulomatosis with polyangiitis (GPA, also known as Wegener's granulomatosis); microscopic polyangiitis (MPA); and eosinophilic granulomatosis with polyangiitis (EGPA, also known as Churg-Strauss syndrome) — all with frequent respiratory manifestations.
Diffuse alveolar hemorrhage (DAH) caused by capillaritis occurs in about 25 percent of patients with GPA and MPA, either at presentation or during a disease relapse, whereas DAH is extremely rare in EGPA. Patients with DAH usually have detectable ANCAs, either targeting proteinase 3 (PR3) or myeloperoxidase (MPO). Lung nodules, masses or cavities are disease-defining consequences of necrotizing granulomatous inflammation in GPA. Tracheobronchial involvement also is a feature predominantly of GPA, rarely found in MPA but not in EGPA. Asthma and eosinophilic pneumonia are disease-defining features of EGPA when they occur in patients with features of large vessel vasculitis.
Autoantibodies in ANCA vasculitis
There are 2 main kinds of autoantibodies that can be involved in ANCA vasculitis. One is called P-ANCA (perinuclear ANCA). This P-ANCA type of autoantibody usually targets and attaches to something called MPO (myeloperoxidase), which is inside of neutrophils. The other one is called C-ANCA (cytoplasmic ANCA). This C-ANCA (a different autoantibody) usually targets and attaches to something called proteinase 3 (PR3), which is also inside of neutrophils. There are blood tests to detect these autoantibodies (P-ANCA or C-ANCA) in the bloodstream. A small percentage of people will not test positive for either the C-ANCA or P-ANCA type. We often call this “ANCA-negative” autoimmune vasculitis to mean that your disease looks and happens the same way but the ANCA blood test is negative.
Here is a link that goes into much more detail, in layman’s terms. You’ll notice that nowhere above does it mention the abdominal form of this disease? That’s because it’s EXTREMELY rare for it to be anywhere in the abdomen & there’s not much research on it.
https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/anca-vasculitis/
We’ve set this go fund me up in her name as she was too proud to do so herself.
So, if not treated immediately and properly, she will begin to lose organs and/or appendages from the breasts down. The disease she battles with daily, is extremely rare and excruciatingly painful, along with the foreboding fact that the vascular area could hemorrhage, this limits her from leaving her bedroom and home, with the exception of doctor’s appointments and ER visits.
We are asking you to help her afford treatments, travel, rental car, co-pays, lodging, etc. at any of these... The Mayo Clinic, the Cleveland Clinic, Johns Hopkins, or another of the major experimental centers so that she can find a Doctor and team with the appropriate skill sets to help her receive remission. The three Doctors she’s presently seeing have suggested one of the above hospitals/clinics.
Here is a bit more about ANCA:
Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitis comprises three different syndromes — granulomatosis with polyangiitis (GPA, also known as Wegener's granulomatosis); microscopic polyangiitis (MPA); and eosinophilic granulomatosis with polyangiitis (EGPA, also known as Churg-Strauss syndrome) — all with frequent respiratory manifestations.
Diffuse alveolar hemorrhage (DAH) caused by capillaritis occurs in about 25 percent of patients with GPA and MPA, either at presentation or during a disease relapse, whereas DAH is extremely rare in EGPA. Patients with DAH usually have detectable ANCAs, either targeting proteinase 3 (PR3) or myeloperoxidase (MPO). Lung nodules, masses or cavities are disease-defining consequences of necrotizing granulomatous inflammation in GPA. Tracheobronchial involvement also is a feature predominantly of GPA, rarely found in MPA but not in EGPA. Asthma and eosinophilic pneumonia are disease-defining features of EGPA when they occur in patients with features of large vessel vasculitis.
Autoantibodies in ANCA vasculitis
There are 2 main kinds of autoantibodies that can be involved in ANCA vasculitis. One is called P-ANCA (perinuclear ANCA). This P-ANCA type of autoantibody usually targets and attaches to something called MPO (myeloperoxidase), which is inside of neutrophils. The other one is called C-ANCA (cytoplasmic ANCA). This C-ANCA (a different autoantibody) usually targets and attaches to something called proteinase 3 (PR3), which is also inside of neutrophils. There are blood tests to detect these autoantibodies (P-ANCA or C-ANCA) in the bloodstream. A small percentage of people will not test positive for either the C-ANCA or P-ANCA type. We often call this “ANCA-negative” autoimmune vasculitis to mean that your disease looks and happens the same way but the ANCA blood test is negative.
Here is a link that goes into much more detail, in layman’s terms. You’ll notice that nowhere above does it mention the abdominal form of this disease? That’s because it’s EXTREMELY rare for it to be anywhere in the abdomen & there’s not much research on it.
https://unckidneycenter.org/kidneyhealthlibrary/glomerular-disease/anca-vasculitis/
We’ve set this go fund me up in her name as she was too proud to do so herself.
Organizer
Bridget Blair
Organizer
City of Saint Peters, MO
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