Learning through experience and sharing strength immune system diseases, chronic illn
"Just Keep Swimming"
It's time to live with purpose
"Just Keep Swimming"
It's time to live with purpose
About mypeculiarimmunesystem.com
Blogging for a purpose
Living with chronic illness is not easy. Throughout this medical journey, I have learned so many things. The purpose of this site is to share with others, the things that have helped me along the way and to provide a place for others to share and support one another. When things get tough, remember to "Just Keep Swimming" immune system diseases
A little bit of me
My Blog
Let's Get Acquainted
After countless appointments with various physicians and years with no resolve, the puzzle pieces started to come together. I finally landed in the right places and I am so thankful for all the providers who have helped me along the way. I am now part of a research program and hope to be a part of finding a cure for all Autoimmune Diseases. I could not have done this without my family and the wonderful care I have received from my current care team!
Video's
Penn Medicine RP Center
A little bit about Behcets Disease
Understanding Behcets
A little bit about Lupus
Penn Medicine RP Center
The Mighty Immune System
"I miss the sunlight on my face"
Many people with autoimmune diseases suffer from sensitivity to sunlight. The sun can actually trigger a flare in some. Click on the picture for more information. Lupus is one of the main diseases for photosensitivity.
"Sweet's Syndrome" there is really nothing sweet about it!
"Living with RP"
Knowledge is Power
What is Relapsing Polychondritis
What is Relapsing Polychondritis
What is Relapsing Polychondritis
Relapsing Polychondritis (RP) is a rare and degenerative autoimmune disease that affects cartilage in the body. Relapsing polychondritis (RP) causes a systemic inflammatory response that can be fatal without proper care and treatment. RP can affect multiple organs in the body; however, it primarily affects the cartilaginous structures in the ears, nose, airways, and joints. It can also affect the eyes, skin, heart valves, and brain. autoimmune system symptoms
Signs and symptoms
What is Relapsing Polychondritis
What is Relapsing Polychondritis
The signs and symptoms of RP vary from patient to patient. The most common early signs and symptoms include:
- Inflammation, redness, swelling, or pain of the outer ear
- Redness and pain in the eyes
- Sore throat, neck pain, or a hoarse voice
- Shortness of breath, wheezing, or a dry cough
- Hearing loss, tinnitus, or ringing in the ears
- Pain and redness of the nose
- Skin lesions
- Joint pain or swelling
- Rib or sternum pain
- General malaise, low-grade fever, loss of appetite
List of symptoms is not comprehensive.
Causes
What is Relapsing Polychondritis
Diagnosis
The cause of relapsing polychondritis is unknown. Some researchers believe RP is an autoimmune disease that occurs when antibodies attack cartilaginous tissue. Other researchers believe RP is caused by a sensitivity to Type II collagen, a substance found in skin and connective tissues.
Finding the cause of relapsing polychondritis is an important step toward finding treatments and cures. That’s the foundation is investing so heavily in research.
Diagnosis
Living with RP
Diagnosis
Relapsing polychondritis is extremely difficult to diagnose for a couple of reasons. First, it’s an extremely rare disease that isn’t well-known to the medical community. Second, since the cause is unknown, there is no available blood test to make a rapid diagnosis. As a result, diagnosis is based on clinical symptoms and signs that fit the pattern consistent with RP.
If RP isn’t diagnosed early and treated effectively, there can be irreversible damage and long-term complications for patients.
Treatment
Living with RP
Living with RP
Treatment for RP is currently focused on managing symptoms and preserving the affected cartilage. RP is a complex condition that requires a team approach to patient care. We recommend the following:
- Dermatologists or specialists in infectious diseases should be involved early to evaluate the patient for infectious causes of cellulitis or perichondritis.
- Rheumatologists should also be involved early and often become the patient’s primary care provider.
- Ophthalmologists should also be involved early to diagnose, monitor, and treat the potentially devastating complications that can occur with the patient’s eyes.
- Cardiologists, neurologists, nephrologists, and otolaryngologists can help manage other aspects of RP.
- Plastic surgeons can provide nasal reconstruction if the patient experiences saddle nose deformity.
Living with RP
Living with RP
Living with RP
It can feel overwhelming and hopeless to receive a diagnosis of relapsing polychondritis. The RP Foundation is working to change this by investing in research. You will find a collection of excellent patient resources on their website to help you better understand your diagnosis and find support.
Relapsing Polychondritis Foundation
Relapsing Polychondritis Foundation
Relapsing Polychondritis Foundation
Click the link below to access information and find help! The RP Foundation and Race for RP are great resources!
Doctor's Corner
My disease does not define me
I believe that health is not just the absence of disease, but a state of complete physical, mental, and social wellbeing. I will be adding information, photos, and videos of things I have learned along the way. This will be a place to share Doctor's and Provider's along with information they have provided that "actually" make a difference! We all need a support system and it helps to share symptoms along with photos and certain therapies that have made a positive difference in the disease process. Here we can help each other find a way to make our lives a little easier even if it is just knowing we are not alone! Let your faith be stronger than your fear!
Rheumatology, Endocrinology, Dermatology, Ophthalmology, Pulmonology, Urology, Cardiology, Hematology, Genealogy, Oncology
Knowing the name of your attacker is half the battle. The most IMPORTANT THING IS TO KEEP GOING UNTIL YOU GET A DIAGNOSIS.
YOU CAN NEVER GIVE UP, KEEP GOING UNTIL YOU FIND A PROVIDER WHO WANTS TO FIGURE IT OUT! I HAVE BEEN BLESSED TO WALK THROUGH THE DOORS OF THESE PHYSICIAN'S. CLICK BELOW TO FIND A LIST OF THE DOCTOR'S OR NURSES WHO HAVE HELPED ME ALONG THE WAY! (UPDATING ALONG THE WAY)
Join Our Mailing List
Sign up to hear from us.
A picture is worth a thousand words: A Health Photo Gallery
Articles and other Goodies
"Knowledge is Power"
RP ARTICLE (2) (pdf)
DownloadContact Me
Together we are better! If you have anything you would like for me to share, please let me know!
Sharing tips and medications or therapies that have worked and sharing information for support and for care.
I am not a physician, only a patient who wants to help others by sharing what I have learned along the way.
mypeculiarimmunesystem.com
Nixa, Missouri, United States
Copyright © 2024 mypeculiarimmunesystem.com - All Rights Reserved.
Powered by GoDaddy