12 Real Ways Vasculitis Impacts People's Lives

When my then-undiagnosed systemic urticarial vasculitis was getting worse, I was completely overwhelmed. I dealt with blurry vision, I had trouble feeling my legs and had painful swelling and hives.

Vasculitis is a family of mostly rare autoimmune diseases which can impact people’s lives greatly and can cause people to have issues with their organs. You may recognize the name of the doctor who helped work to bring down the fatality rate of the then often deadly disease: Dr. Anthony Fauci. 

For Vasculitis Awareness Month, which is in May, The Mighty decided to ask people living with vasculitis how this autoimmune disease affects their lives, from work to organ involvement to triggers. If they shared what type of vasculitis they live with, you can click on the condition’s name to learn more about that type of vasculitis.

Here is what they had to share: 

1. Chronic Pain

“I’m achy all over for most days, and just generally feel sick in the stomach.” – Anna H., who lives with central nervous system vasculitis.

2. Fatigue

“My energy just collapsed for about two years. I have regained about 50 percent of my stamina.” – Miguel M., who has Granulomatosis with Polyangiitis.

“I am constantly fatigued and can’t plan anything as I don’t know how I am going to be on any day which makes my anxiety heighten.” – Dawn P.

“I’m almost always tired, and very often so exhausted after doing the smallest of tasks.” – Anna H., who lives with central nervous system vasculitis. 

3. Issues With Joints

“I am currently walking with a cane from weakness and pain in the right hip and knees.” – Roslyn L.

“I have a seriously bad spine. I can only stand for 15/20 minutes.” – Tracy H.F., who has Granulomatosis with Polyangiitis.

4. Re-Learning How to Move

“I couldn’t control my hand movements to write. As I moved on, walking was one of the first victories.” – David K., who has Granulomatosis with Polyangiitis.

5. Blurry Vision

“My eyesight is blurry all the time. I get dizzy if I bend over.” – Tracy H.F., who has Granulomatosis with Polyangiitis.

6. Problems With Work

“Missed about a month of work and paused homeschooling and most other activities. Went back to work part-time and was able to still get paid through first short-term disability insurance, then long-term after six months.” – Veronica C., who has Granulomatosis with Polyangiitis.

7. Organ Involvement

“I have had kidney issues, seven kidney infections in approximately 12 months.” – Nichol J., who has IgA vasculitis. 

“Even when I started getting cardiac symptoms and pleading with ER attendants to look at my hear, I was quickly brushed off for being too young to have cardiac issues.” – Emily F.

8. Needing Assistance

“It turns your life upside down. Being independent, working, self-sufficient and carefree are a thing of the past. Now you need to ask for help with even the smallest of tasks.” – Priscilla F, who lives with Cryoglobulinemia.

“I now no longer work, and I’ve had to apply for disability. I rely heavily on my family to help me with my house and kids and I can do nothing with ease.” – Cheyanna W., who lives with Eosinophilic Granulomatosis with Polyangiitis.

9. Dealing with Triggers

“Cold, stress, allergies, gluten/dairy/sugar/dyes, fabrics on my skin, lack of sleep and strenuous workouts all factor into flare-ups.” – Angie S., who has urticarial vasculitis.

“No more visits to the hot tub either after a good workout. Hot water, stress and allergies cause my flare-ups.” – Anne K.

10. Experiencing Weight Gain and Other Side Effects from Prednisone

“After spending a lot of time with friends and them being so kind and loving, it has helped to boost my self-esteem some, but I just have to figure out how to love my body again for what I have been through and surviving it all.”  – Karen J, who has Eosinophilic Granulomatosis with Polyangiitis.

“The steroids played havoc on my mental, physical and emotional health. I had so many highs and lows.” – Moe T., who has IgA vasculitis. 

11. Relationship Problems

“Trying to meet a potential love interest is nonexistent. 1) Nobody would want to see this and 2) you can’t do any activities to have fun on a date.” – Angie S., who has urticarial vasculitis.

12. Modifying Exercise

“No more hiking in the woods in my area from April-September. Have to be careful with my diet and stay with moderate exercise.” – Anne K.

What would you add?