Jackie’s vitiligo story

Last Updated on 14th November 2022 by Caroline Haye

“I have this under control for now”

Last month’s post, How Vitiligo Makes You Feel, featured a variety of individuals sharing their innermost feelings about living with the skin condition. But for this month’s blog I am focussing on just one contributor, who kindly agreed to describe in more detail how vitiligo has affected her life. So here, in this 56 year old librarian’s own words, is Londoner Jackie’s vitiligo story… so far.

“From having almost perfectly clear skin most part of my life, I was diagnosed with vitiligo at the age of 52 in 2017. It’s one of those days I will never be able to erase from my mind as it changed how I lived forever. I only ever really noticed vitiligo on brown or darker skin and I realised from that moment that this was going to happen to me.

It was soul destroying and devastating as I was told by my doctor there was no cure and to accept it. She told me to not let it affect me too much, followed by people telling me ‘at least its not cancer or heart problem’ or ‘at least you are not dying’… All true, but somehow these comments did not help. Others told me not to dwell on it and you just have to accept it… Again true, but still these comments to this day have not helped my mindset on this disease.

“I know I am lucky to have amazing and special friends who have all supported and understood how I feel. But I have also come across other people who have not been so understanding.

My own research

“I came to understand that this disease could spread like wildfire if I did not take control and become my own doctor to some point. So I started my own research by searching through books and online websites. I started to look into my diet, medication, lifestyle for anything that could stop or slow it down from becoming worse.

“I saw dermatologists but was just prescribed steroid ointments. Not happy with this, I tried UVB phototherapy. But it was so hard asking for time out from full- time employment to spend literally five to ten minutes in a hospital… Not to mention the invasion of dignity that the treatment involved. This just led me to feeling more depressed and I wished I could just die.

Phototherapy and other treatments

“I was then given a UVB home lamp. But, even with following the set time duration, I just ended up burning my leg for six weeks during lockdown and trying to heal the burn with aloe vera. And, by then, I must have spent thousands of pounds on trying different medicines, ointments, oils and potions to try and stop this horrendous disease.

“I understand it does not bother some people. Some people have even become successful with it, like Winnie Harlow in her modelling career, which is very admirable. However, my deep-rooted inner happiness would be to recover all or most of my pigmentation again. No matter how shallow this may sound.

I cannot understand why there is no cure for vitiligo

“To this day, I still cannot understand why there is no cure for vitiligo. It’s most probably due to funding… Because it is considered as just a cosmetic problem, as opposed to something more serious like finding vaccines for coronavirus.

“On top of everything, there is also so much controversy. For example, in the Ayurvedic tradition your diet is so restricted. When you have this disease, you must not eat certain foods such as fish, dairy, eggs, milk, curds, meat, and anything that is considered as unhealthy or a trigger point.

“In the Western tradition, the recommended diet is almost the opposite… Ensuring your skin receives the right nutrients, such as the omegas, mainly from fish like salmon and sardines, eggs for protein and milk for vitamin D and calcium. However, who is right? And the question is would any of these foods make vitiligo better or worse?

I was so desperate I even swallowed cow urine tablets

“As I was so desperate for a treatment to work for me, I ended up spending so much money. But I soon became very aware of people who were trying to sell me a magic cure… People who told me if I took certain medicines, or followed a certain diet, that my vitiligo would soon disappear. But, of course, this did not happen.

“To prove my desperation, I have even swallowed cow urine tablets – to no avail. But, then again, maybe it is true that cow urine is beneficial if you rub it over your skin. (Maybe due to its antibiotic and antifungal properties?) I never managed to do this and had the cow urine bottle sitting in my bathroom cabinets for ages. I just felt too sick to do anything with it. And I wondered why had God given me this punishment and what did I ever do to anyone.

My less successful discoveries

“On my journey, I discovered many things and how to deal with my vitiligo. I tried Homeopathy with Dr Vijay Jobanputra who was a very kind doctor in India. He gave me an insight about my diet. But I found the treatment too slow and had to give up as I was finding new vitiligo was spreading.

“I then tried Ayurhealthline, a company that is run by a reputable qualified specialist who I believe has helped many people. However, due to my extremely sensitive skin. I found the oils very pungent and, more often than not, my skin would just be very itchy and burn.

My more successful discoveries

“I discovered Changing Faces, who guided me on camouflaging my skin with the correct make up.

“Another discovery was Vitiligo Store. I have never met Caroline, who runs it [and this blog]. But, from the outset, there was something very special and honest about her website. I never felt she was pulling the wool over my eyes as so many scammers did. So, over the years, I started to explore her products and would read all her blogs.

“For many years, I have followed her protocol with Five a Day capsules and powder, Boost and Collagen… As well as drinking copper water and following a diet with mainly fresh vegetables and salads. I do feel, had I not discovered her products, my skin would be far worse than it is. (The spread has been slow compared to the many other people I see who have it.)

“I read Dappled by Lisa Brown and felt there were many similarities between heroine’s vitiligo story and mine.

“I am also very aware that stress, toxins and chemicals can make me worse at this stage in my life. So I am just trying to control these the best way I can.

Under control for now

“I have this under control for now… Spending time reading books and being creative in my hobbies like the arts and crafts… Walking more and watching what I eat. I also take additional supplements like Kayakalp Vati, Neem and Giloy tablets as it has an important plant ingredient called Tinospora Cordifolia.

“I love the western diet and wish I did not have to think about what I ate. But I am just too scared to take the risk of eating fish or eggs or drinking milk in case more white patches appear. For now, I will stick to eating mainly fresh fruits and vegetables which I suppose is a good thing with or without vitiligo.

“Finally, I would like to thank Caroline for giving me an opportunity to freely write how I feel about this condition. Hopefully it may help someone else. I live in the hope that maybe one day there will be a cure for vitiligo. But, until then, I am very grateful to Caroline for sharing her knowledge and spreading the word through her amazing website.”

Watch out for a book… maybe!

For my part, I would like to return the compliment and thank Jackie for the time, thoughtfulness and emotion she has clearly invested into sharing her story. Appropriately for a librarian, she followed her text with this comment… “There are so many more things to say on this subject but that would be like writing a book.” Well, I for one, would love to read that book, Jackie. So I say, go for it! 😁

Also, look out for more personal vitiligo stories in the coming months…