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Video Library

Visit the VF YouTube Channel to search our video collection.

There you will find videos covering a wide variety of topics such as:

  • Vasculitis treatments
  • Coping with the mental health impact of vasculitis
  • Making the most of your doctor’s appointments
  • The impact of vasculitis and vasculitis treatments on your heart, lungs, kidneys, sinuses, ears, eyes, bones, and skin
  • Pregnancy and family planning with vasculitis
  • Exercise and nutrition with vasculitis
0:00 
1:13 How can vasculitis and the medication affect our physical and sexual interest?
7:11 After I began taking prednisone my mood swings, and especially my body image (I gained 15lbs) drained me of any interest in intimate or even romantic activity.  Is this normal?
12:57 My question is, how do you find a balance with loved ones when you feel like you are a burden?
16:02 I was dating a guy for three years. I was diagnosed with GPA during that time.  My boyfriend became resentful because I wasn’t the same person he knew when we began dating.  
18:44 For people having vasculitis, GPA for example, is their life expectancy shortened due to the disease always being there?
22:23 My husband and I want to have a baby, but I’m getting more anxious, concerned, and doubtful if we should do it.  I have active EGPA.  What are the physical risks to both myself and the baby?
25:29 How does vasculitis affect our GI systems?  I lost my colon; I have an ileostomy stoma. I have gastroparesis.  Intimacy has been a major problem.
30:29 I am a male with testicular pain from my vasculitis.  It makes intimacy almost impossible with my wife.  Is this common with men who have vasculitis?
35:24 How vasculitis helped me to find the perfect partner.

Asking Sensitive Questions about Vasculitis
October 2024

Additional Resources:
Webinar on Parenting with Vasculitis https://youtu.be/UJeNqz0EJVA

Find additional helpful resources on family planning, pregnancy, and vasculitis https://www.vasculitisfoundation.org/treatments-research/vasculitis-pregnancy-registry/

Webinar on Dating with a Chronic Illness https://youtu.be/OJYGkMxcbFQ

Webinar on Navigating Relationships with a Chronic Illness https://youtu.be/Dlz4HWFcb20

 Sex-Interrupted: Igniting Intimacy While Living with Illness or Disability by Iris Zink & Jenny Palter

Come As You Are by Emily Nagoski, her Podcasts, and her new book: Come Together

A free PDF guide  from the United Ostomy Associations of America
https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf

0:00
1:13 How can vasculitis and the medication affect our physical and sexual interest?
7:11 After I began taking prednisone my mood swings, and especially my body image (I gained 15lbs) drained me of any interest in intimate or even romantic activity. Is this normal?
12:57 My question is, how do you find a balance with loved ones when you feel like you are a burden?
16:02 I was dating a guy for three years. I was diagnosed with GPA during that time. My boyfriend became resentful because I wasn’t the same person he knew when we began dating.
18:44 For people having vasculitis, GPA for example, is their life expectancy shortened due to the disease always being there?
22:23 My husband and I want to have a baby, but I’m getting more anxious, concerned, and doubtful if we should do it. I have active EGPA. What are the physical risks to both myself and the baby?
25:29 How does vasculitis affect our GI systems? I lost my colon; I have an ileostomy stoma. I have gastroparesis. Intimacy has been a major problem.
30:29 I am a male with testicular pain from my vasculitis. It makes intimacy almost impossible with my wife. Is this common with men who have vasculitis?
35:24 How vasculitis helped me to find the perfect partner.

Asking Sensitive Questions about Vasculitis
October 2024

Additional Resources:
Find additional helpful resources on family planning, pregnancy, and vasculitis https://vasculitisfoundation.org/treatments-research/vasculitis-pregnancy-registry/

Sex-Interrupted: Igniting Intimacy While Living with Illness or Disability by Iris Zink & Jenny Palter

Come As You Are by Emily Nagoski, her Podcasts, and her new book: Come Together

A free PDF guide from the United Ostomy Associations of America
https://www.ostomy.org/wp-content/uploads/2018/03/Intimacy-After-Ostomy-Surgery-Guide.pdf

22 6

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5FRjdGNDMzN0I2RTI3MDlG

Asking Sensitive Questions About Vasculitis

0:00
5:47 Lab testing.
7:11 Complete Blood Count (CBC)
9:58 Complete Blood Count in Vasculitis
11:52 CBC and treatment
12:49 Inflammatory markers
15:50 Increased ESR
17:52 Increased ESR:  Other influences on this test
21:00 Role of CRP
21:28 C-reactive protein
24:22 Urinalysis testing
28:14 Complete metabolic profile: kidney and liver function testing
31:15 ANCA Associated Vasculitis testing
32:41 c-ANCA  and p-ANCA
34:27 ANCA in non-vasculitis syndrome
35:53 IgA (immunoglobulin A) vasculitis
36:58 Cryoglobulinemic vasculitis
39:44 Q:  My MCV and MCH can fluctuate at times.  Can any of our medications cause this?
40:27 Q: Is the PR-3 test a good indicator of inflammation and vasculitis?
41:19 Q: What if p-ANCA and c-ANCA are negative, but MPO is positive? What could that indicate?
42:17 Q:  Should both a routine UA and a Comprehensive Metabolic Panel always be performed or will the latter suffice? 
43:34 Q:  How often should I have a urinalysis done?
45:20 Q: Why would 2 tests for urine protein/blood, reflexive microscopic show normal results but a 'clean catch' show abnormal results for the same urine sample? 
47:07 Q:  How are blood tests affected or reflected by Actemra, specifically CRP?
48:05 Q:  I am on Rituxan and my ANCA is negative, is that because I am on treatment.
48:43 Q:  How do I read B cell count in lab results? My doctor asked for this before next Rituximab infusion.
50:32 Q: Regarding eosinophils is absolute or percentage better for reporting?
51:33 Q:  My monocyte percent is always high and my lymphocyte percent is always low. Is that from Rituxan
52:19 Q:  Can COVID affect your inflammation rates on these tests?
53:26 Q:  Can you explain Anion Gap?
55:34 Q:  What is Albumin and does it mean anything to Vasculitis patients?
57:09 Q:  The doctor mentioned meds to mitigate urine protein, what are those?

Understanding Your Lab Results
October 2024

Download a PDF of the slide deck from this webinar:  https://www.vasculitisfoundation.org/wp-content/uploads/2024/10/Vasculitis-webinarUpdated_.pdf

0:00
5:47 Lab testing.
7:11 Complete Blood Count (CBC)
9:58 Complete Blood Count in Vasculitis
11:52 CBC and treatment
12:49 Inflammatory markers
15:50 Increased ESR
17:52 Increased ESR: Other influences on this test
21:00 Role of CRP
21:28 C-reactive protein
24:22 Urinalysis testing
28:14 Complete metabolic profile: kidney and liver function testing
31:15 ANCA Associated Vasculitis testing
32:41 c-ANCA and p-ANCA
34:27 ANCA in non-vasculitis syndrome
35:53 IgA (immunoglobulin A) vasculitis
36:58 Cryoglobulinemic vasculitis
39:44 Q: My MCV and MCH can fluctuate at times. Can any of our medications cause this?
40:27 Q: Is the PR-3 test a good indicator of inflammation and vasculitis?
41:19 Q: What if p-ANCA and c-ANCA are negative, but MPO is positive? What could that indicate?
42:17 Q: Should both a routine UA and a Comprehensive Metabolic Panel always be performed or will the latter suffice?
43:34 Q: How often should I have a urinalysis done?
45:20 Q: Why would 2 tests for urine protein/blood, reflexive microscopic show normal results but a 'clean catch' show abnormal results for the same urine sample?
47:07 Q: How are blood tests affected or reflected by Actemra, specifically CRP?
48:05 Q: I am on Rituxan and my ANCA is negative, is that because I am on treatment.
48:43 Q: How do I read B cell count in lab results? My doctor asked for this before next Rituximab infusion.
50:32 Q: Regarding eosinophils is absolute or percentage better for reporting?
51:33 Q: My monocyte percent is always high and my lymphocyte percent is always low. Is that from Rituxan
52:19 Q: Can COVID affect your inflammation rates on these tests?
53:26 Q: Can you explain Anion Gap?
55:34 Q: What is Albumin and does it mean anything to Vasculitis patients?
57:09 Q: The doctor mentioned meds to mitigate urine protein, what are those?

32 6

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5ERENFNTk4Q0Q2MTZDMTA5

Understanding Your Lab Results

0:00
4:05 Varicella Zoster Virus
5:40 Herpes Zoster/Shingles
6:32 Lifetime risk of Herpes Zoster (HZ)
7:30 Complications after Herpes Zoster (HZ)
8:27 Treatments
9:27 Immunosuppression and HZ
10:30 Recombinant Zoster Vaccine – Shingles
12:37 Current recommendations for vaccination
13:02 Understanding Reactogenicity
14:06 Adverse Effects – Clinical Trials
14:51 Safety in immunocompromised patients
15:55 Results: IMID flares
17:40 Commonly heard from patients: “I don’t need/want RZV because….”
18:27 Common patient concerns
21:26 Q: What is the efficacy after you received the two vaccines?
23:04 Q:  I am on Rituxan regiment every 6 months  What is the optimal time to receive the vaccine?
24:09 Q: Why did I get sick after each of the two Shindrex shots?  it was like the flu with each one.
25:42 Q:  How long after you’ve had the shingles should you receive Shingrix?
26:24 Q:  Is there a time frame once a shingles outbreak begins in which you should get a starter on acyclovir or the other medicine to maximize effectiveness?
27:10 Q: Can the doctor explain why shingles can just affect one-half of the body?  How is this tied into the brain and neurological function?
28:40 Q:  Is there a risk to the eye from shingles?
29:44 Q: I had shingles in 2019, a shingles vaccine (2 shots) in 2022 and then I was just diagnosed with shingles in 2024.  Is that common?
30:30 Q:   I had my 2 shingles vaccines in 2022. I was diagnosed this year with Vasculitis this year. I had 2 infusions of Rituximab and was told they worked (whatever that means) and no more infusions. Currently on Imuran for the Vasculitis. Am I still prone to shingles?
31:26 Q:  How does the occurrence break out by gender?
31:47 Q:  Is it okay to take the shingles vaccine while getting the COVID or flu vax?
32:59 Q:  Can stress by itself cause an outbreak of shingles?
34:26 Q:  Is it true that shingles can be transmitted through the air, or by touch?
35:36 Q:  Is there any relationship between herpes zoster and herpes simplex?
37:03 Q:  Is it true that parents used to hold chickenpox sleepovers to help children get chickenpox?
39:46 Q:.I was the one that had singles, the vaccine and then I got shingles again this year.  Should I get another vaccine?
41:24 Q:  Are those who tend to get cold sores (and had chicken pox as a child) on the mouth also more prone to get shingles?

Shingles: What you need to know.
Recorded September 2024

Download Dr. Calabrese's slide presentation:  https://www.vasculitisfoundation.org/wp-content/uploads/2024/09/HZ-for-Vasc-foundation-9.9.24-final-CC.pdf

0:00
4:05 Varicella Zoster Virus
5:40 Herpes Zoster/Shingles
6:32 Lifetime risk of Herpes Zoster (HZ)
7:30 Complications after Herpes Zoster (HZ)
8:27 Treatments
9:27 Immunosuppression and HZ
10:30 Recombinant Zoster Vaccine – Shingles
12:37 Current recommendations for vaccination
13:02 Understanding Reactogenicity
14:06 Adverse Effects – Clinical Trials
14:51 Safety in immunocompromised patients
15:55 Results: IMID flares
17:40 Commonly heard from patients: “I don’t need/want RZV because….”
18:27 Common patient concerns
21:26 Q: What is the efficacy after you received the two vaccines?
23:04 Q: I am on Rituxan regiment every 6 months What is the optimal time to receive the vaccine?
24:09 Q: Why did I get sick after each of the two Shindrex shots? it was like the flu with each one.
25:42 Q: How long after you’ve had the shingles should you receive Shingrix?
26:24 Q: Is there a time frame once a shingles outbreak begins in which you should get a starter on acyclovir or the other medicine to maximize effectiveness?
27:10 Q: Can the doctor explain why shingles can just affect one-half of the body? How is this tied into the brain and neurological function?
28:40 Q: Is there a risk to the eye from shingles?
29:44 Q: I had shingles in 2019, a shingles vaccine (2 shots) in 2022 and then I was just diagnosed with shingles in 2024. Is that common?
30:30 Q: I had my 2 shingles vaccines in 2022. Was diagnosed this year with Vasculitis this year. I had 2 infusions of Rituximab and was told they worked (whatever that means) and no more infusions. Currently on Imuran for the Vasculitis. Am I still prone to shingles?
31:26 Q: How does the occurrence break out by gender?
31:47 Q: Is it okay to take the shingles vaccine while getting the COVID or flu vax?
32:59 Q: Can stress by itself cause an outbreak of shingles?
34:26 Q: Is it true that shingles can be transmitted through the air, or by touch?
35:36 Q: Is there any relationship between herpes zoster and herpes simplex?
37:03 Q: Is it true that parents used to hold chickenpox sleepovers to help children get chickenpox?
39:46 Q:.I was the one that had singles, the vaccine and then I got shingles again this year. Should I get another vaccine?
41:24 Q: Are those who tend to get cold sores (and had chicken pox as a child) on the mouth also more prone to get shingles?

Shingles: What you need to know.
Recorded September 2024

15 2

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5DQjg2RDQyMEVGQkZFOEVF

Shingles: What You Need to Know.

0:00
0:46 Introduction of Dr. Guy Katz
4:40 What is autoimmunity?
7:38 Genetics.
9:02 What are environmental triggers?
11:36 How to prove something causes vasculitis.
13:16 Observational studies.
14:32 Challenge with observational studies.
17:08 Trigger of disease onset vs. flares.
19:14 Environmental triggers of vasculitis.
19:57 Infections.
22:46 COVID-19
23:20 Seasonality.
24:45 Airborne exposures.
25:51 Occupational exposures.
27:01 Cigarette smoke.
28:27 Medications and drugs.
30:09 On an individual level.
31:51 Final thoughts.
35:42 Q:  Is there more research into COVID possibly triggering vasculitis?
36:42 Q:  Can changes in barometric pressure trigger symptoms?
37:40 Q:  Can a medication exposure that triggers vasculitis only start to show certain symptoms a month later?
40:55 Q:  Can exercise be considered an environmental trigger?
42:02 Q:   What about silica as a possible environmental trigger?
44:18 Q: The environmental triggers of vasculitis that you mentioned initially - was that at disease onset or flares?
45:47 Q: Is autoimmune disease inherited since there is a genetic component?
47:21 Q:  What about exposure to mold and jet fuel?
49:21 Q:  I am confused about when something could cause vasculitis and when something requires the immune system.
50:39 Q:  Can you name the top three possible environmental factors associated with ANCA-vasculitis?
52:19  Q:  How can you get involved in the studies cited in the presentation?
54:44 Q:  What about the Shingrix vaccine?
57:46 Q:  Do you expect more researchers to look at this area of potential environmental triggers with vasculitis?
58:35 Q:  Has the doctor ever seen a case where family members were both exposed to the same element—diagnosed with vasculitis?

Vasculitis and the Environment:  A Closer Look
August 2024

Download a PDF of Dr. Katz's slide presentation:  https://www.vasculitisfoundation.org/wp-content/uploads/2024/08/NEW-VF-Environmental-Triggers-002.pdf

0:00
0:46 Introduction of Dr. Guy Katz
4:40 What is autoimmunity?
7:38 Genetics.
9:02 What are environmental triggers?
11:36 How to prove something causes vasculitis.
13:16 Observational studies.
14:32 Challenge with observational studies.
17:08 Trigger of disease onset vs. flares.
19:14 Environmental triggers of vasculitis.
19:57 Infections.
22:46 COVID-19
23:20 Seasonality.
24:45 Airborne exposures.
25:51 Occupational exposures.
27:01 Cigarette smoke.
28:27 Medications and drugs.
30:09 On an individual level.
31:51 Final thoughts.
35:42 Q: Is there more research into COVID possibly triggering vasculitis?
36:42 Q: Can changes in barometric pressure trigger symptoms?
37:40 Q: Can a medication exposure that triggers vasculitis only start to show certain symptoms a month later?
40:55 Q: Can exercise be considered an environmental trigger?
42:02 Q: What about silica as a possible environmental trigger?
44:18 Q: The environmental triggers of vasculitis that you mentioned initially - was that at disease onset or flares?
45:47 Q: Is autoimmune disease inherited since there is a genetic component?
47:21 Q: What about exposure to mold and jet fuel?
49:21 Q: I am confused about when something could cause vasculitis and when something requires the immune system.
50:39 Q: Can you name the top three possible environmental factors associated with ANCA-vasculitis?
52:19 Q: How can you get involved in the studies cited in the presentation?
54:44 Q: What about the Shingrix vaccine?
57:46 Q: Do you expect more researchers to look at this area of potential environmental triggers with vasculitis?
58:35 Q: Has the doctor ever seen a case where family members were both exposed to the same element—diagnosed with vasculitis?

Vasculitis and the Environment: A Closer Look
August 2024

35 0

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS5CMUM0NzY5NzdEQzlGRjAx

The Environment and Vasculitis: A Closer Look

0:00
6:18       A brief overview of our skin.
10:10     Case 1.  Patient with Hypersensitive Vasculitis.
15:27     Why does my doctor do a skin biopsy?
21:58     Case 2.  IgA vasculitis.
22:52     Case 3.  Urticarial vasculitis.
26:55     Case 4.  Young adult with GPA vasculitis and skin involvement.
31:20     Larger papules, stellate purpura / ulcers, livedo.
34 :49    EGPA with skin involvement.
36 :03   Case 5.  12-year-old with nodules from Polyarteritis Nodosa.
39:09    It’s not always vasculitis.
42:27    Summary.  Petechiae. Livedoid and stellate shapes, ulcers. Nodules, Livedo, and necrosis.
45:08    Q&A:  It seems like every time I start tapering off high doses of prednisone, I start getting little bumps on my skin like KP. Is that normal?
46:24    Q&A:  Can COVID affect the skin?  
48:28    Q&A:  If prednisone (in my case 40 mg) is not solving purple foot symptoms/LCV, what progression of other treatments do you recommend for skin symptoms?
50:40    Q&A:  Are collagen supplements helpful to repair our skin after a flare-up with skin involvement?
53:11    Q&A:  Have you seen an increase in Vasculitis since the COVID vaccines were introduced?  
54:36   Q&A:  Can capillaritis, urticarial vasculitis, and dermatitis coexist?
55:47   Q&A:   Have any of your patients had vasculitis skin reactions because of the flu or COVID vaccine?
58:43   Q&A: Can there be skin involvement with GCA vasculitis?
59:50   Q&A: Can you get skin issues in the groin area?
1:00:33 Q&A: Can skin be biopsied after a flare has already cleared.  What is involved in a skin biopsy and does it hurt?
1:02:22 Q&A: Can you speak about chronic hives—when it’s not urticarial vasculitis.
1:04:12 Q&A:     Can Petechiae move up and down your leg?

Vasculitis and the Skin
August 2024

0:00
6:18 A brief overview of our skin.
10:10 Case 1. Patient with Hypersensitive Vasculitis.
15:27 Why does my doctor do a skin biopsy?
21:58 Case 2. IgA vasculitis.
22:52 Case 3. Urticarial vasculitis.
26:55 Case 4. Young adult with GPA vasculitis and skin involvement.
31:20 Larger papules, stellate purpura / ulcers, livedo.
34 :49 EGPA with skin involvement.
36 :03 Case 5. 12-year-old with nodules from Polyarteritis Nodosa.
39:09 It’s not always vasculitis.
42:27 Summary. Petechiae. Livedoid and stellate shapes, ulcers. Nodules, Livedo, and necrosis.
45:08 Q&A: It seems like every time I start tapering off high doses of prednisone, I start getting little bumps on my skin like KP. Is that normal?
46:24 Q&A: Can COVID affect the skin?
48:28 Q&A: If prednisone (in my case 40 mg) is not solving purple foot symptoms/LCV, what progression of other treatments do you recommend for skin symptoms?
50:40 Q&A: Are collagen supplements helpful to repair our skin after a flare-up with skin involvement?
53:11 Q&A: Have you seen an increase in Vasculitis since the COVID vaccines were introduced?
54:36 Q&A: Can capillaritis, urticarial vasculitis, and dermatitis coexist?
55:47 Q&A: Have any of your patients had vasculitis skin reactions because of the flu or COVID vaccine?
58:43 Q&A: Can there be skin involvement with GCA vasculitis?
59:50 Q&A: Can you get skin issues in the groin area?
1:00:33 Q&A: Can skin be biopsied after a flare has already cleared. What is involved in a skin biopsy and does it hurt?
1:02:22 Q&A: Can you speak about chronic hives—when it’s not urticarial vasculitis.
1:04:12 Q&A: Can Petechiae move up and down your leg?

Vasculitis and the Skin
August 2024

22 6

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS44QTA1QTQyRTc3M0VGQzYx

Vasculitis and the Skin

0:00 
1:55 Introductions

3:42 Cringe Questions:  “ How can you be sick when you look so good? /  How bad can 
 vasculitis be?”

8:53 Cringe Questions:  “ Isn’t vasculitis just a treatable skin disease?”  /  “Is vasculitis a form of cancer?”

12:41 "Does chemotherapy treatment cause confusion that vasculitis is a form of cancer?"

18:20 "Is it better to call vasculitis an autoimmune disorder?"  

19:19  Cringe Questions:  “What's the name of that disease you have and what does it do to  you?”

27:36 Cringe Questions:  “How long will it be for your vasculitis to go away?”  / “Is there a 
cure for vasculitis?”

30:23 Cringe Question:  “Is vasculitis fatal?” 

40:28 Cringe Questions:  “ Why are you always so tired? Is that part of your illness?” / “ Are you sure you’re not exaggerating your symptoms?”

41:25 Powerful quote:  “People with rare diseases don’t fake their symptoms. They fake being  well.”

44:11 Dr. Banerjee explains why fatigue is a real and common part of vasculitis.

54:15 Cringe Questions: “Can’t you just eat healthier” /  Can't you take Vitamins and eat 
healthy to boost your immune system?”

58:58 Cringe Questions:  “Why are you still wearing a mask?”  /  “Are you wearing a mask 
because your disease is contagious?”

1:02:04  Cringe Question:  “ I didn’t think people of color could get vasculitis.”

VF Patient Roundtable:  Dealing with the Vasculitis Cringe Questions

0:00
1:55 Introductions

3:42 Cringe Questions: “ How can you be sick when you look so good? / How bad can
vasculitis be?”

8:53 Cringe Questions: “ Isn’t vasculitis just a treatable skin disease?” / “Is vasculitis a form of cancer?”

12:41 Does chemotherapy treatment cause confusion that vasculitis is a form of cancer?

18:20 Is it better to call vasculitis an autoimmune disorder?

19:19 Cringe Questions: “What's the name of that disease you have and what does it do to you?”

27:36 Cringe Questions: “How long will it be for your vasculitis to go away?” / “Is there a
cure for vasculitis?”

30:23 Cringe Question: “Is vasculitis fatal?”

40:28 Cringe Questions: “ Why are you always so tired? Is that part of your illness?” / “ Are you sure you’re not exaggerating your symptoms?”

41:25 Powerful quote: “People with rare diseases don’t fake their symptoms. They fake being well.”

44:11 Dr. Banerjee explains why fatigue is a real and common part of vasculitis.

54:15 Cringe Questions: “Can’t you just eat healthier” / Can't you take Vitamins and eat
healthy to boost your immune system?”

58:58 Cringe Questions: “Why are you still wearing a mask?” / “Are you wearing a mask
because your disease is contagious?”

1:02:04 Cringe Question: “ I didn’t think people of color could get vasculitis.”

VF Patient Roundtable: Dealing with the Vasculitis Cringe Questions

38 13

YouTube Video UExyNkJ3YXU2dVNtc1MwVUtEbVByTWJ3VG5WQl9pT1JHTS4wMDFGNzBEOTU4Q0Y1Q0RG

VF Patient Roundtable: Dealing with Vasculitis Cringe Questions

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