Navigating a Maze: Understanding Vasculitis

Vasculitis is a rare condition, presenting a daunting challenge to those it effects. The nature of this condition leaves much unknown, as it varies significantly from person to person. It does not help that it is such a rare condition so finding someone nearby that is experiencing this is not common, which can make those with this disorder feel quite lonely in their experience.

Before beginning this blog post, I want to disclose that I am not a medical professional, but rather a fellow warrior living with this condition. I hope to use my experiences and research to shed light on this often-overlooked condition. Ignoring Vasculitis only hurts the potential medical breakthroughs we so desperately need.

What is Vasculitis? Vasculitis develops as the inflammation of blood vessels grows, potentially obstructing blood flow to vital tissues and organs in the body of someone, no matter the age, gender, or ethnicity. Sometimes Vasculitis is self-resolving, but it can require aggressive medication regimens for some. Symptoms of this disorder include fatigue, joint pain, rashes, ulcers, and sensations of pins and needles in various parts of the body which can make its identification somewhat challenging. While the exact cause remains unknown, factors like autoimmune disorders, medication reactions, past infections (e.g., Hepatitis B and C), and environmental triggers are suspected to be involved. 

Consider this statistic from the Vasculitis Foundation; they revealed an incidence of about 2 cases per 100,000 adults. This shows the rarity of this disorder. As I mentioned, Vasculitis comes in many different types including, but not limited to Urticarial Vasculitis, Rheumatoid Vasculitis, and Central Nervous System Vasculitis. Each variant presents distinct risks and symptoms. This is often why 2 people with Vasculitis will have such different experiences and issues that arise.

Diagnosing Vasculitis relies on various symptoms and diagnostic tools. Skin biopsies may be used to confirm conditions like Urticarial Vasculitis, while imaging techniques like MRI and CT scans are used to assess tissue and organ damage that may or may not have occurred. Blood tests investigate biomarkers that indicate inflammation, guiding the way for specific treatments and pathways. Anti-inflammatory medications may be used like corticosteroids to mitigate flare-ups. Flare-ups can look different and have different triggers from person to person. Sometimes flare-ups can be caused by various food items, sunlight, stress, etc. There are also emerging therapies like Rituxan, which holds promise based on recent FDA approvals for certain cancers and ongoing studies for autoimmune conditions like Vasculitis. I’ll spare you more details, because my understanding ends there- the rest is what the doctors are for. As always, consult with your medical professional before taking any advice you find online about anything pertaining to medical conditions. In the past, I have had so many individuals try to sell me supplements that I later found out would damage my issue further.

In my experience, hives were all over my body and a skin biopsy and bloodwork confirmed my Vasculitis after months of steroids and being passed from doctor to doctor. I am very fortunate to have the Dermatologist that I have as it is me and he is advocating for my well-being monthly to continue treatments to continue finding one as my Vasculitis evolves. My Vasculitis is disturbing my kidneys and I also see a Nephrologist to follow up on the vasculitis in my kidneys. My Nephrologist and Dermatologist work together to constantly discuss my case and continue to try different medications and treatments as my Vasculitis has been pretty treatment resistant over the years. It is a constant battle to continue managing vasculitis, and again, every battle is quite different.

Managing Vasculitis includes a multitude of lifestyle adjustments like diet, exercise, and self-care patterns. Seeking specialized medical care is vital, given the disorder’s complexity. The impact on mental well-being is another obstacle as this disorder can be mentally taxing. Vasculitis can cause a lot of pain and uncertainty, but with appropriate support and medical care, one can begin to work toward achieving the best quality of life possible.

Unraveling the complexities of Vasculitis will open doors for more acknowledgement and treatments. By increasing awareness, research, and support networks, we pave the way for an improved understanding, treatment, and ultimately, hope for those navigating the intricate maze of Vasculitis. Due to its rarity, it can be challenging to find a great support system for others that understand your experience. Search your type of Vasculitis on Facebook and I bet you are guaranteed to find a group supporting those with that condition. I am a part of quite a few for my conditions, and it has been so helpful in aiding my loneliness I can feel from Vasculitis.

May is National Vasculitis Awareness month, stay educated and do your part by sharing information like this to spread awareness across the world. For more information on Vasculitis, the Vasculitis Foundation is a great source, and there are many peer-reviewed articles that you can find in the National Library of Medicine and other related sites.