Your Vitiligo Story: Tell the World

What is your gender?

Male

Female

At what age did you develop vitiligo?

How many months or years have you had vitiligo?

How do you describe your skin tone?

Light

Medium/Olive

Dark

What kind of vitiligo do you have?

Generalized (on both sides of your body)

Segmental (in one confined area on your body)

I don't know

Select any/all activities that have impacted your participation because of vitiligo

Going to work or school

Participating in sports

Making new friends

Being intimate with spouse or partner

attending parties or social events

Shaking hands with others

Traveling

Any others?

Before you developed vitiligo, did you participate in more social activities?

Yes

No

Have you ever felt that if you didn’t have vitiligo your life would have been better?

Yes

No

Have you ever avoided or canceled appointments for:

Routine or annual medical procedures

Barber/hairdresser

Manicurist

Any others?

Select each response below that applies to actions you’ve taken because of vitiligo.

Applied self-tanner or make-up to cover my vitiligo

Worn long sleeves, long pants, scarves, hats, or sunglasses etc. to avoid exposing my vitiligo

Avoided going to events, parties, concerts, or other activities that you once enjoyed

Arrived or left early to avoid the crowds

Shopped online instead of at stores

Changed vacation destinations

Ordered take-out instead of dining in at restaurants

Avoided making eye contact with strangers

Permanent or temporary tattooing

Any others you would like to add?

Has your vitiligo ever made you feel sad, discouraged, or depressed?

Yes

No

Are there any comments or thoughts you would like to share?

Managing my vitiligo on a daily basis is a burden?

Yes

No

Do you worry about your vitiligo spreading?

Frequently

Sometimes, but not a lot

Rarely

Could vitiligo influence you to NOT have children?

Yes

no

Do you find warm weather more difficult because more of your vitiligo is visible?

Yes

No

Do you feel that your family understands how vitiligo makes you feel?

Yes

No

Do you feel that your friends understand how vitiligo makes you feel?

Yes

No

Have you ever been stared at in public because of vitiligo?

Yes

No

Do you mind when people ask you about vitiligo?

Yes

No

What bothers you about people asking about your vitiligo?

Have you ever seen a doctor about your vitiligo?

No

Yes

Did you feel that your doctor understood or cared about how vitiligo made you feel?

Was your vitiligo ever diagnosed INCORRECTLY by a physician?

Yes

No

If Yes, what did the doctor say you had?

Have you ever used/tried a vitiligo treatment, product, or supplement that you found online?

Yes

No

If you HAVE used an online vitiligo treatment, product, or supplement, what factors influenced your decision to try an online product?

If you HAVE used an online vitiligo treatment, product, or supplement, did it work for you?

One, or some worked well

One, or some worked, but not well

None worked

About how many online treatments, products, or supplements have you used since being diagnosed with vitiligo?

0-10

10-20

Too many to count

If you have used an online vitiligo treatment, product, or supplement, what is the most you’ve spent on these products in a single year?

Under $50

$50 - $100

$100 - $500

$500 - $1000

More than $1000

Have you ever used a vitiligo treatment prescribed by a physician?

Yes

No

If you NEVER tried a treatment, select all reasons that influenced that decision.

Couldn’t find a doctor to prescribe

Doctor said the treatment wouldn’t work

Insurance wouldn’t cover

Too expensive even with insurance

Too time consuming to use

Too many scheduling conflicts

Afraid of safety or long-term risks

I didn’t care enough to bother with it

Other Comments

If you NEVER tried a treatment, were there ever times you WISHED that you HAD treated your vitiligo?

No

Yes

If you NEVER tried a treatment, but WISHED that you HAD treated your vitiligo, What made you wish that you HAD tried a treatment?

If you DID try treatment/s, did your doctor make you feel encouraged about the treatment/s working?

Yes

No

Not/applicable

If you DID try treatment/s, did your doctor explain how long it would take for the treatment to work?

Yes

No

Not applicable

If you DID try treatment/s, did your doctor explain what to expect, or how you could tell if/when the treatment was working?

Yes

No

Not applicable

If you DID try treatments, did insurance cover any part of the treatment cost? Select all that apply.

Yes, it covered the full cost.

Yes, it covered most of the cost.

Yes, it covered a small amount, but I still had to pay a lot.

Yes, my insurance provided coverage, but only after I filed an appeal.

No, my insurance company did not cover any part of my treatment cost.

If your insurance company did NOT cover your treatments, did your physician's office TELL you that you could file an appeal?

Yes

No

Not applicable

If your insurance company did NOT cover your treatments, Did your physician’s office HELP to file an appeal?

Yes

No

Not applicable

At any point in your life was there a treatment/s that you WANTED to try but you were UNABLE to?

Yes

No

If you DID want to try a treatment but were UNABLE to, select all reasons that kept you from trying.

My doctor would not prescribe it for me

My insurance wouldn’t cover it

Too many scheduling conflicts

With or without insurance, it was too expensive

I was afraid of the safety or side effects

Other reason/s?

If there was a safe treatment that you could afford, that worked well, and you only had to use it once a week, would you consider trying it?

Yes

No

Any other thoughts or comments you'd like to share about this question.

Is there anything that you want the world to know about vitiligo?