VF Patient Roundtable: Dealing with Vasculitis Cringe Questions

[@MC_Hammerpants_]

Thank you for this. I’ve sent it to loved ones to remind them that just because I’ve been diagnosed and have been going through treatment for 7 years doesn’t mean I’m better. The fatigue is awful. Wearing masks in public is terrible. ❤

[@vasculitisfoundation]

We are so glad you found this helpful.

[@adryen763]

Thank you for posting!

[@vasculitisfoundation]

You're welcome. We are glad you found it helpful.

[@sharlenew5021]

I’m glad that I found this round table. I have been dx with Takayasu arteritis. (Try saying that 3 times fast 😂) It has taken me years to stop being so hard on myself for the fatigue. It sure helps knowing that you are out there dealing with those same questions too. Anyway I will certainly keep an eye out for more of your discussions 😁

[@vasculitisfoundation]

Thank you @sharlenew5021. Our hope is to address these questions and misconceptions--especially about the fatigue in this discussion.

[@vasculitisfoundation]

Don't know if you have already connected with the Vasculitis Foundation, but if not, we wanted to make you aware of some resources you may find helpful. We offer virtual support groups which are great opportunities to connect with others living with vasculitis www.vasculitisfoundation.org/living-well/find-support/ We also have frequent live webinars, in-person conferences, and educational resources. You can find out more about all of these on our website www.vasculitisfoundation.org/

[@sharlenew5021]

@@vasculitisfoundation thank you I will look into that. 😁

[@cherylannevagg9692]

I have small fibre neuropathy but also Cryo 2 and still no drs have communicated to me the fact they understand. So I'm uncertain what will happen. I put most things on hold. Legs are numb painful and feel swollen. Wish drs would diagnose beyond Cryo 2 if that's possible as I'm in the limbo stage. No confidence in drs a really knowing

[@vasculitisfoundation]

I am unsure what your doctor means by cryo 2 as a diagnosis. There is a type of vasculitis called cryoglobulinemic vasculitis. You can find out more about how it is diagnosed and treated here: www.vasculitisfoundation.org/education/vasculitis-types/cryoglobulinemic-vasculitis/ and also find a playlist of videos about cryoglobulinemic vasculitis here kzbin.info/aero/PLr6Bwau6uSmvvPOujnIWRl1U6Im_Ykbld Attending one of our virtual support groups may also be helpful as you try to move beyond the limbo stage and determine what your next steps are. You can find out more about our support groups here www.vasculitisfoundation.org/living-well/find-support/ If you have questions, please don't hesitate to contact the Vasculitis Foundation www.vasculitisfoundation.org/connect/

[@PriyanthiFernando-zl8bt]

I have 2 wounds in both feet ..

[@vasculitisfoundation]

We are so sorry to hear that. We hope you are getting the treatment you need. If you have any questions about vasculitis please don't hesitate to contact us www.vasculitisfoundation.org/connect/ You can also learn more on our website www.vasculitisfoundation.org/

[@PriyanthiFernando-zl8bt]

@@vasculitisfoundation thank you