Veech Medical Fund
Donation protected
October 18, 2017 After 13 months of testing I was diagnosed with Relapsing Polychondritis. My life flipped upside down. I just want to live as normal of life as possible as a mom of 3.
RP -The Ride of My Life
Better Understand Relasping Polychondritis
Race for RP
Marcela Ferrada's rare disease profile of RP, she is the lead research physician at the NCATS National Institute of Health Rare Disease for Relapsing Polychondritis.
Relapsing polychondritis (RP) is a rare autoimmune inflammatory disease that attacks mainly cartilaginous structures or causes serious damage in proteoglycan-rich structures (the eyes, heart, blood vessels, inner ear)
Vasculitic syndromes are the most commonly observed disorders associated with relapsing polychondritis. Its complications, respiratory, cardiovascular, renal and neurological are life-threatening; thus it is important to recognize the disease and its complications early. Treatment for relapsing polychondritis may have serious side-effects which should be taken into account when managing these patients.
Relapsing polychondritis (RPC) is a multisystem disorder of chondromalacia involving any cartilage. Respiratory tract involvement is the greatest threat to life.
The possibility of cusp rupture with sudden haemodynamic deterioration should be considered in patients with relapsing polychondritis who develop aortic regurgitation.
. In view of the potentially progressive nature of glomerular disease with RP, the renal status should be investigated in all patients with RP.
he 5- and 10-year probabilities of survival after diagnosis were 74% and 55%, respectively. The most frequent causes of death were infection, systemic vasculitis, and malignancy.
Anemia at diagnosis was a marker for decreased survival in the entire group. There was an interaction between other disease variables and age in determining their impact on outcome. For patients less than 51 years old, saddle-nose deformity and systemic vasculitis were the worst prognostic signs.
Relapsing polychondritis (RP) is associated with other rheumatic or autoimmune disease in about 30% of cases; however, an association with malignancy is rare with the exception of myelodysplastic syndrome (MDS).
Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. MDS is considered a type of cancer.
In about 1 in 3 patients, MDS can progress to a rapidly growing cancer of bone marrow cells called acute myeloid leukemia (AML). In the past, MDS was sometimes referred to as pre-leukemia or smoldering leukemia. Because most patients do not get leukemia, MDS used to be classified as a disease of low malignant potential. Now that doctors have learned more about MDS, it is considered to be a form of cancer.
Advanced Relapsing Polychondritis can lead to destruction of supporting cartilage, causing floppy ears, saddle nose, pectus excavatum, and visual, auditory, and vestibular abnormalities. Tracheal narrowing can lead to dyspnea, pneumonia, or even tracheal collapse. Coexisting systemic vasculitis (leukocytoclastic vasculitis or polyarteritis nodosa), myelodysplastic syndrome, or cancer is possible.
I am currently enrolled in a study at the National Institute of Health for this disease.
All referenced information listed above is found in the following link.
Up to Date Clinical Manifestations of Relapsing Polychondritis
Thank you❤
If you would rather donate directly to research and help another with this disease. The following websites are great ones.
Race for RP
The Friends of Patients at the NIH
Relapsing Polychondritis Awareness and Support Foundation
The young fellow RP Warrior. His funding link is on the page to help him and his family.
Cameron's Epic Battle.
RP -The Ride of My Life
Better Understand Relasping Polychondritis
Race for RP
Marcela Ferrada's rare disease profile of RP, she is the lead research physician at the NCATS National Institute of Health Rare Disease for Relapsing Polychondritis.
Relapsing polychondritis (RP) is a rare autoimmune inflammatory disease that attacks mainly cartilaginous structures or causes serious damage in proteoglycan-rich structures (the eyes, heart, blood vessels, inner ear)
Vasculitic syndromes are the most commonly observed disorders associated with relapsing polychondritis. Its complications, respiratory, cardiovascular, renal and neurological are life-threatening; thus it is important to recognize the disease and its complications early. Treatment for relapsing polychondritis may have serious side-effects which should be taken into account when managing these patients.
Relapsing polychondritis (RPC) is a multisystem disorder of chondromalacia involving any cartilage. Respiratory tract involvement is the greatest threat to life.
The possibility of cusp rupture with sudden haemodynamic deterioration should be considered in patients with relapsing polychondritis who develop aortic regurgitation.
. In view of the potentially progressive nature of glomerular disease with RP, the renal status should be investigated in all patients with RP.
he 5- and 10-year probabilities of survival after diagnosis were 74% and 55%, respectively. The most frequent causes of death were infection, systemic vasculitis, and malignancy.
Anemia at diagnosis was a marker for decreased survival in the entire group. There was an interaction between other disease variables and age in determining their impact on outcome. For patients less than 51 years old, saddle-nose deformity and systemic vasculitis were the worst prognostic signs.
Relapsing polychondritis (RP) is associated with other rheumatic or autoimmune disease in about 30% of cases; however, an association with malignancy is rare with the exception of myelodysplastic syndrome (MDS).
Myelodysplastic syndromes (MDS) are conditions that can occur when the blood-forming cells in the bone marrow become abnormal. This leads to low numbers of one or more types of blood cells. MDS is considered a type of cancer.
In about 1 in 3 patients, MDS can progress to a rapidly growing cancer of bone marrow cells called acute myeloid leukemia (AML). In the past, MDS was sometimes referred to as pre-leukemia or smoldering leukemia. Because most patients do not get leukemia, MDS used to be classified as a disease of low malignant potential. Now that doctors have learned more about MDS, it is considered to be a form of cancer.
Advanced Relapsing Polychondritis can lead to destruction of supporting cartilage, causing floppy ears, saddle nose, pectus excavatum, and visual, auditory, and vestibular abnormalities. Tracheal narrowing can lead to dyspnea, pneumonia, or even tracheal collapse. Coexisting systemic vasculitis (leukocytoclastic vasculitis or polyarteritis nodosa), myelodysplastic syndrome, or cancer is possible.
I am currently enrolled in a study at the National Institute of Health for this disease.
All referenced information listed above is found in the following link.
Up to Date Clinical Manifestations of Relapsing Polychondritis
Thank you❤
If you would rather donate directly to research and help another with this disease. The following websites are great ones.
Race for RP
The Friends of Patients at the NIH
Relapsing Polychondritis Awareness and Support Foundation
The young fellow RP Warrior. His funding link is on the page to help him and his family.
Cameron's Epic Battle.
Fundraising team (2)
Jessica Veech
Organizer
La Grange, KY
Michael Veech
Team member
