fbpx
Share this article →

Our impact

With your support, we:

Previous Next

We are building a meditation app for dealing with skin conditions

  • Therapeutic support for dealing with difficult emotions
  • Professionally scripted meditations by certified psychotherapists
  • Choice of different voice overs to suit your taste

You are more than skin deep

Begin your journey

A pandemic diagnosis, my year one journey & why I am here to stay.

My name is Emily Krasch, and I was diagnosed with vitiligo at age 31. I noticed my first spot approximately 4 years ago. One day while shaving I found a small white patch under my right armpit. I didn’t know what it was, but it wasn’t visible to others, so I thought nothing of it. Nevertheless, as time went by, the small patch began to grow larger. Then, in January 2020 I noticed another white patch on my right hip. As the year continued white patches across my body started to rapidly appear. In a period of two months the white patches had multiplied across my hands, on my thighs, my forearm, my face and so on…I had no idea what was going on, but I was concerned.

We were at the beginning of the pandemic lockdown, so I made a virtual appointment with a dermatologist and as of March 2020 I was diagnosed with vitiligo.

My first GP appointment

I had never been to a dermatologist before and the doctor who diagnosed me stated she did not specialize in treating vitiligo. She referred me to a doctor who I was told was an expert in vitiligo. He has been my focal point for treatment, however, my experience with him has not been short of frustration and disappointment.

From the moment he entered the exam room all he could talk about was getting me to start a phase 3 clinical trial and if I did not want to do that one, he had plenty of other trials coming up – including one that involved injecting something into my body.

His first examination of my spots was not even focused on me as the patient, but on if I would qualify for the specific trial he wanted me to enter. He briefly described the traditional treatments to me (topical cream, UVB light treatment), but did his best to keep the topic of conversation focused on doing a trial.

This was an incredibly stressful experience for me. I had no idea what I was doing, what was going on, or what to ask the doctor, and to top it all off I wasn’t allowed to bring anyone with me to my appointments due to COVID.

My learning journey

They say you shouldnever over-Google your symptoms/diagnosis, but since my doctor was no help to educate me, I had to educate myself.  As I started to learn about the condition, I quickly became overwhelmed. I learned that stress, diet, and sun exposure can have a drastic effect on the condition. I learnt that while there is treatment, there is no cure for vitiligo and that no one knows the true cause of the condition.

I had also learned that loss of skin pigmentation meant loss of melanin, which is what gives your skin it’s colour. This meant that as someone with vitiligo, I was at severe risk of getting sunburn because of the lack of pigmentation in my skin.

That’s exactly how the vitiligo on my hands started, I got sunburn, and my pigmentation never returned. On top of all this, in a later visit to my doctor, I was told my vitiligo was a classic case of “thyroid induced vitiligo” – which means my first autoimmune disease caused my second. That was a lot to swallow.

This information coupled with the fact that white patches were rapidly appearing all over my body completely stressed me out. I was worried about many things like (1) did having vitiligo and thyroid disease (two autoimmune diseases) put me more at risk for COVID? (2) how would I function in the sun and during the summertime? (3) how was I going to look? (4) how would my spots develop? …so on and so forth!

I even got to the point where I was so concerned about sun exposure that I started wearing hats (which I never do), was applying sunscreen continuously, and wore long sleeve shirts in extremely hot weather to cover my skin. I was so afraid I was going to cause more vitiligo that I entered into a very unhealthy mindset about something that I couldn’t control.

My emotional journey

I broke down a few times and got sad because I didn’t want to look like this. I didn’t understand why this was happening to me, you know? I was really concerned and embarrassed about it; especially because it was becoming more visible on my face. Because I am white and at the beginning stages of the condition, it is much less visible on me than it would be on a person with darker skin, but nonetheless, I was my worst critic.

After a month or so of freaking out I recognized that my response was unhealthy and one day I just decided to refuse to let myself enter a place of shame or embarrassment. I decided I didn’t want to hide this from people or spend my days trying to cover it up. I had decided to move forward with the phase 3 clinical trial.

My way forward

My original plan was that I would write a blog about being diagnosed and my decision to take part in the study. I was then going to post updated results of the trial on a monthly basis. But then I decided this wasn’t good enough. I wanted to research other people who have had/have this condition – those who have had it since childhood and those who developed it in adulthood. I wanted to learn about how it affected their life and how they approached it. I wanted my response to be healthy and I was unwilling to hide.

Not just surviving, but thriving

I have learnt so much about the journey of my fellow vitiligo beauty’s, about the years of trying to hide the condition with make-up and clothing and so on. I learned about their long path to acceptance and how so many people who have this condition have learned to love their skin. I learnt how they refer to their body as pieces of art and how they believe people in the vitiligo community were meant to stand out and be different.

I listened to a podcast called The Thriving Community of Vitiligo where many good points and perspectives were shared. All of this was eye opening and impactful. So much so, that in a period of seven months, my opinion, outlook and approach to this condition drastically changed.

Learning to love my skin

I didn’t end up pursuing the clinical trial, but I did undergo the traditional forms of treatment (topical cream for my face and UVB for the rest of my body) for approximately 6 months before deciding to forego treatment all together. I didn’t end up posting monthly blogs for tracking my progress, but I did publish Loving the Skin, You’re In in October 2020. The response I received was heartwarming.

The importance of my support circle

Everyone I know has been supportive since day one. And while I am truly blessed to have so many amazing people in my life, I think many people underestimate the global support network we have today. Whether you have a skin condition, suffer from anxiety and depression, or something else, people are much more understanding, empathetic, and supportive today when it comes to being different.

No one should ever have to suffer alone or feel like they have to hide. That’s the worst thing anyone can ever do. I know this because I spent most of my life believing that showing emotion was a weakness. For many years I battled my struggles alone, but I have worked extremely hard in life to break down walls and barriers I created. While my outlook on vitiligo was not always so positive, I’ve been told my journey to acceptance and love of my skin was remarkably quick. I can attest that without God, and without the years I spent struggling to no longer hide, show emotion, and lean on others with full transparency that this rapid transition would not be possible……

Goodbye to treatments!

I officially stopped treating my vitiligo in Dec 2020 and I am not inclined to treat it ever again! I wanted to stop 3 months into treatment, but I had promised someone that I would give it a shot for 6 months. For me personally, it felt like a waste of time and money. I hated using the topical cream. It was greasy and would get in my hair, on my hands, and my desk/keyboard while working. For the UVB light treatment, I had to drive 30 min only to be in a machine for less than 2 min and drive 30 minutes back. I had to apply the cream twice a day and do light therapy 2-3 times a week. It was a lot of time and money spent on something that wasn’t guaranteed to help, and the honest truth is I was starting to fall in love with my vitiligo.

By month 7 I was no longer ashamed of nor embarrassed about it. I decided I would no longer try to cover it up or live-in fear of the sun, and most importantly, I had vowed that I would not waste years of my life trying to treat something that I cannot control and that in my opinion, has produced millions of imperfectly beautiful individuals of all shapes, sizes and colors.

My spots are now a part of my beauty

It’s been three months since I last treated my vitiligo, and I have many new spots, with the majority of my spots on the right side of my body and on my inner thighs. I think my spots look awesome. I think they are beautiful. I think perhaps, just like the millions of other people who share this condition, I’m meant to be different, and to stand out in the crowd.

I feel blessed to be where I am in my journey and I hope that reading my story has helped inspire you to love the skin you are in. Loving your skin may mean one thing for you and a completely different thing for another, but I hope this blog helps you to see the beauty in imperfection. May you become inspired by the millions of people who are imperfectly beautiful.

Some of the resources that helped Emily understand and learn about vitiligo which may be of interest:

https://www.instagram.com/vitiligo.beauty

https://youtu.be/RS6o-2XtbsE https://youtu.be/C1mnoArEPXk

Mattel announce second Fashionista range which includes another Barbie with vitiligo

Last year we brought you the news that toy manufacturer Mattel were set to launch a new Fashionista range that would include a Barbie with vitiligo, and just twelve months later we excitedly bring you some more news; Mattel will be releasing a second range, adding another Barbie with vitiligo to the family.

The announcement of the new range is another ‘big win’ for the community and after we shared the news on our social media platforms in January, it didnt take long for others with vitiligo to start spreading the news. Like many, I was overwhelmed with excitement, especially as I feel like we are still digesting the first Barbie and the positive impact it’s had on so many children and adults.  

Representation of a truer society is much more prevalent today. Back when many of us were younger, there were no story books that had characters with vitiligo (or a visible difference) and there certainly weren’t any toys. But as time has evolved and the body positivity movement has grown, brands such as Mattel have ‘stepped up’ and invested time in education and understanding the importance in teaching children about disabilities, skin tones and unique conditions.  

The new diverse range, which will be available from this summer, also includes a black male Barbie, a Barbie with an afro and another in a wheelchair. As the news went to the press, Lisa McKnight, Senior Vice President and Global Head of Barbie and Dolls, Mattel commented that “As Barbie accelerates to new heights as the #1 global toy property* and holds as the #1 fashion doll property**, the message is clear that Barbie brand is more relevant than ever. As the most diverse fashion doll line on the market, we take great responsibility in better reflecting the world around us and know there are many positive benefits to exposing children to dolls with different skin tones, hair types, abilities and more. We are proud to offer an even wider range of diverse choices with the latest Barbie Fashionistas line so more kids see themselves reflected in our doll line.” 

*Source: The NPD Group/ Retail Tracking Service, U.S. Dollar Sales, January-December 2020

*Source: The NPD Group/Retail Tracking Service/G12/JAN-DEC 2020/Fashion Doll Class/Projected USD

**Source: The NPD Group/ Retail Tracking Service, GBP Sales, Full Year 2020

The vitiligo doll released in 2020 was one of the top 5 bestsellers in the Fashionista range in the US and globally, it was in the top 10. 

Why it’s important to protect your skin whilst wearing PPE

We know that wearing face protection is going to be a part of many people’s lives for the foreseeable future.  

A study published on the 2nd February 2021 looked into whether mask wearing could induce the koebner phenomenon.  The study, based in Italy, used patients referred to dermatology during the Covid19 pandemic.  It was found that for patients with vitiligo who were wearing a mask for an average of 7 hours a day did display an increased spread of hypopigmented patches.  Full details of the study can be found here.

This does mean not that wearing a mask will induce the phenomenon in everyone living with vitiligo.  However, if having read the study you feel you might be at risk, we can pass on these recommendations taken from the US National Pressure Injury Advisory Panel and UK National Health Service:

Keep hydrated by drinking plenty of waterKeep your skin hydrated by applying simple moisturisers – try to do this at least 30 minutes before putting on your mask so that it is properly absorbed by the skinTry to ensure that sweat doesn’t build up in your mask as excess moisture like this can be damagingEnsure that your mask is fitted properly, and take measures to prevent rubbingSkin sealants and barrier creams may also be used to help strengthen your skinWhere possible take breaks from wearing masks or adjust the mask so that pressure build-up is relieved If you do notice any skin irritation or injury then treat it immediately to minimise infection and damageSelect your mask carefully and try different styles so that you can identify one that offers both protection but also feels comfortable and fits well.  

To conclude, mask‐related Koebner phenomenon is an important clinical sign to orient clinician’s therapeutic protocols, especially in patients with conditions such as vitiligo. Further studies and big data34 are needed to understand in detail the immunological changes induced by masks.

News

FDA request your comments on recent patient-focused drug development meeting

On March 8, 2021, FDA hosted a virtual public meeting on Patient-Focused Drug Development for Vitiligo. FDA was interested in hearing patients’ perspectives on the impact of vitiligo on daily life and patient views on treatment approaches. In this news article we catch up with event attendees to reflect on the event, and also share how you can still influence this groundbreaking moment for our global vitiligo community.

The significance of the event for people in the UK 

The FDA has formal and informal relationships with their foreign counterparts across the globe. The FDA’s international programs have grown and its experts are often called on to direct, manage and coordinate the growing body of international work involving the World Health Organisation and International Conference of Drug Regulatory Authorities. Although we have our own regulatory bodies in the UK, developments in the US will without doubt influence decision making across the world. This was an excellent opportunity for people living with vitiligo in the UK to speak alongside the american community and be heard by a key player in vitiligo treatment decision making. 

What we took away from the event

This event was an incredible recognition of the great work medical professionals and patient support groups are doing in the US to raise awareness of vitiligo and the need for better treatments. It sets the bar for what we need to be doing with our own regulatory bodies in the UK to give better treatments for our own vitiligo community.

Dr Richard Huggins shares his reflections with us

Now specialising in vitiligo, Dr Huggins first came across the condition in medical school in 2004. He was struck by how common the condition was and how many unanswered questions there are. Currently working in the Henry Ford dermatology department in the US, Dr Huggins is also Chairman of the Vitiligo Support section of the Global Vitiligo Foundation.

How significant do you think the event was for the vitiligo community?

‘I thought it was one of the most important things that has happened to the vitiligo community ever. The fact it even took place, shows vitiligo is now high on the FDA radar. The FDA has only had around 30 patient focus meetings like this, only 3 of which were dermatology focused. What is really exciting is how organically this meeting happened, the FDA heard about the growing interest in treatments, support group growth and the increased awareness of the condition, and all this culminated in the FDA deciding it needed to hear directly from people living with vitiligo. 

This is a big moment for the vitiligo community to recognise that their condition is important to the US government, and that the government is acknowledging that more attention and treatment is required. 

For me, an unexpected benefit of the event was all the unifying discussions prior to the meeting.  Support groups came together to talk strategy and how to maximise the impact of the event. These conversations really bought the community together, and led to further discussions on how to work more collaboratively in future. 

Over 1000 people registered, 700 of which had vitiligo and 300 of which were from industry (pharmaceutical companies) or were medical professionals – to have all these people wanting to learn and hear more about how vitiligo affects people, and gaps in treatment, was incredible.’

Did you have and perceptions that were challenged by the event?

‘I have worked with local vitiligo support groups for 12 years, and worked nationally for 7 years – so I thought I really understood the impact of vitiligo. Hearing individuals share their experiences at the event really deepened my understanding of the personal impact of the condition. 

I left the meeting with an even greater appreciation for the extent to which vitiligo affects people’s lives. I knew ahead of time that the treatments don’t always work, but hearing first hand how ineffective, slow working, messy and disruptive treatment can be – I truly understand now that we have a long way to go in terms of developing the effective, practical treatments and the cure that people need.’

What will you be taking away from the event?

‘Physicians, myself included, need to communicate better to colleagues that don’t specialise in vitiligo. So many people going to a doctor are being dismissed for it being cosmetic or untreatable. We need to encourage our colleagues to speak with empathy, understand the impact of vitiligo, and have a better awareness of the treatments that are available.’

Any final comments?

‘For me the purpose of the meeting was to inform the FDA’s risk-benefit analysis when a pharmaceutical company seeks FDA approval for new treatments. The meeting was really successful in showing the need for new treatments but patients need to make it clear their risk-tolerance for new treatments and studies. 

The FDA is still open to comments from the event, so I hope everyone in our vitiligo community will take this opportunity to share their thoughts on the need for new treatment development.’

Alicia Roufs shares her thoughts with us

Alicia Roufs is the marketing director of a US based national non-profit group called VITFriends, a vitiligo support community. She is also the founder of the local VITFriends support group in Minnesota which currently has 250 members.  Alicia has had vitiligo for over 43 years.

Why did you feel it was important to attend the event?

‘I have spent many years telling people that vitiligo is NOT a cosmetic condition! We have fought hard to have medical people, pharmaceutical companies, and elected officials to take vitiligo seriously and recognised it as an autoimmune disease. So attending a 1st ever FDA drug development meeting was history in the making for vitiligo.’

As someone involved with vitiligo support groups, how significant do you think this was for people living with vitiligo?

‘I think the significance of the event was groundbreaking. Finally we have a huge government agency recognizing vitiligo as a serious condition that needs their attention. We have heard in the past that these FDA meetings have led to huge changes for other diseases that included large funding for research and better drug developments.  

It was great to hear stories of the 10 panelists and 6 conversation starters.  I was asked to be one of the large group conversation starters, so I was able to share my story briefly. It was an honor to be a part of it. There was also an option for people to call in, and we heard several amazing stories of struggle and hardship that people have gone through with vitiligo. I’m hoping this will leave a huge mark on the FDA representatives’ hearts.  

The downside I had of it was not being able to see everyone’s faces and not knowing how many people were actually on the webinar. We were told 1020 people had registered. So that was a bummer. I also wasn’t a huge fan of some of the survey questions.’  

Do you have any last reflections to share with us?

‘I really hope and pray that this will make headway for new therapies for vitiligo or for FDA to approve already used practices for vitiligo.’

Join your voice to the cause

The deadline for leaving comments 10th May 2021, so it’s not too late to have your say and join your voice with the 1000’s of people who attended the meeting:

You can view the full recording from the event here

You can submit you comments about the event here

Clinical Research Training Fellowship announced in Adolescent Dermatology

The Medical Research Foundation recently announced that it was co-funding with the Medical Research Council (MRC) a Clinical Research Training Fellow (CRTF) in Adolescent Dermatology.

The funding competition is now open and details can be found on their website.

The Medical Research Foundation stated that:

Applications are welcomed from clinicians who have the potential to be the research leaders of the future, whose research will increase understanding of the disease mechanisms underlying adolescent skin disorders. Funding may support research that will address the biological questions surrounding skin disorders of relevance to adolescents, such as acne, eczema, psoriasis, rosacea, alopecia and vitiligo.

Full eligibility and remit details are available on the MRC’s webpage for Clinical Research Training Fellows.

Applicants may apply for salary costs and up to £20,000 research costs per year, for up to four years.

There are three opportunities per year to apply for a clinical research training fellowship. See the MRC’s deadlines page for details of opportunities to apply for the scheme.

To apply, please visit the MRC’s dedicated CRTF page.

Catherine Davidson joins our Board of Trustees

We were delighted to welcome Catherine Davidson as our newest member of The Vitiligo Society Board of Trustees. Catherine has been a member of The Vitiligo Society for a number of years prior to joining the board in December 2020.

The Board of Trustees are a group of volunteers all of whom have been affected by vitiligo in some way. They give up their time to ensure that our charity is governed correctly and continues to meet its charitable objectives.

Catherine was diagnosed with vitiligo as a student and found it hard to find information about the condition. She is keen to increase awareness about vitiligo, provide support and advice to others and help the society contribute to research efforts.

Here’s what Catherine had to say about joining the Board:

It has been great to join a team of such enthusiastic and committed trustees. As we develop our strategy I am excited about the future of the Society and how we can work even more effectively to support our members and help beat vitiligo

Catherine has 20 years of experience in government relations, predominantly in the financial services sector, and has worked in Brussels and London. In her spare time Catherine likes to dance, carol sing and is currently learning Gaelic.

You can find out more about how to join our Board by visiting https://vitiligosociety.org/news/volunteers-needed/

Funding from the Vitiligo Society supports new research in the psychological impact of vitiligo

At the end of last year we were approached by the Vitiligo clinic at St John’s Institute of Dermatology, led by Dr. John Ferguson (Consultant Dermatologist) and including clinical psychologist (Dr. Mark Turner), requesting funding assistance for a new research study their team were planning.

The research team were interested in exploring explanations as to why people with Vitiligo experience poor health-related quality of life and distress. In particular, they were interested in if such explanations
include illness perceptions and stigma.

What are illness perceptions and why are they important?

Illness perceptions refer to a patient’s beliefs about the nature, cause and effects of their health problem. They are formed based on a person’s personal and family-based experiences with illness as well as those formed by visiting professionals. Illness perceptions have been shown to offer a strong explanation for why people with a number of long-term illnesses experience poor outcomes, such as depressive mood, anxiety, and impaired quality of life. This finding holds true even after accounting for more objective measures of skin disease used in the dermatology department.

What makes this research unique and important?

The research team were unaware of any other clinical – academic group currently researching both illness perceptions and stigma in the same comprehensive vitiligo study.

We believe that it is important not to assume that the management of skin conditions is entirely about medical treatment and indeed psychological support is likely to help too.

Why we felt this research was a priority for funding support

Denise Oduntan, trustee of The Vitiligo Society explained:

As a society we felt this research was important to fund as it seems to be the first of its class. We know that many people that have vitiligo suffer from mental health issues and we feel this study can help shape the support that vitiligo patients have access to. We are also very aware that people from different cultures suffer different levels of stigma and this study can really help to understand that more.

We are looking forward to sharing the results of this research with you all soon!

The Vitiligo Society is selected for Google Online Marketing Challenge Programme

We were delighted to hear that The Vitiligo Society had been selected to participate in the Google Online Marketing Challenge Programme.

The Online Marketing Challenge offers a unique opportunity for students to get real-world experience of creating and executing online marketing campaigns.  

A student team (pictured above) from Université d’Angers. Francesca Rizal, Victor Riviere, Julien Petitot and Axel Odjo have been matched with our Society and allocated a $10,000 monthly budget of in-kind Google Ads to help increase awareness of the vital work that we do for the vitiligo community.

Our Chairman Simon explained:

The Google Online Marketing Challenge will help The Vitiligo Society optimise the AdGrants search engine advertising budget that is donated by Google. The more frequently our ads appear next to Google search results, the more people will be aware of our mission of raising awareness, reducing stigma and providing support to those living with vitiligo and their families. This is also translated into more memberships, donations and volunteers – the lifeblood of The Vitiligo Society

As well as being a brilliant opportunity to create awareness for our charity, the challenge also provides some valued work experience for the student team. The team, pictured above and led by Francesca Rizal, explained why participating in the challenge was important to them:

 The Google Online Marketing Challenge is a real opportunity for us to apply the SEA knowledge we learn in our courses. This year, we are pleased to collaborate with a charity committed to a cause that is close to their hearts. The Vitiligo Society works daily for people living with this condition, informing them about medical practices, listening to them, but above all being present to help them accept themselves. 

What we hope to accomplish with this challenge is to give a real boost to the members of this charity, whether it be through the development of their network, or by increasing the donations they receive. In any case, this will enable the charity’s volunteers to have more key solutions to propose more and more initiatives to support people living with vitiligo. We are aware that this cause is important to them, so we will give everything to help them as best we can. 

Once the four-week campaign period is over the student team will be providing us with a report of their achievements along with recommendations and insights of how we can continue reaching more people with vitiligo across the globe.

British Association of Dermatologists launch new patient survey

The British Association of Dermatologists (BAD) produced a patient survey in February 2021 to help them better understand dermatology patients’ experience of the COVID-19 pandemic, focusing specifically on how patients have found remote consultations. 

The BAD is a charity that we work closely with and whose charitable objects are the practice, teaching, training and research of Dermatology. The BAD also works with the Department of Health, patient bodies and commissioners across the UK, advising on best practice and the provision of Dermatology services across all service settings.

Remote consultations refer to any non-face-to-face appointment, typically conducted by phone or video conferencing software.

The BAD want to assure anyone thinking about taking part that all information given during the survey is anonymous and won’t be used in any way that would identify you or the hospital, or surgery, where you have received treatment.

This is an important survey, the results of which will influence their communications and lobbying work around remote patient consultations. Remote consultations have the potential to present unique challenges when seeking a skin condition diagnosis and ongoing treatment, so your experiences are key to help the BAD improve the experience for everyone.

Please click here to participate in the survey and share your experience of remote consultations.

The Society publishes new patient leaflet

Over the past year our team has been working hard to update our patient leaflet and we are pleased to announce that it is now available to be downloaded.

Good patient information ensures that anyone who has just received a diagnosis of vitiligo is prepared and fully aware of the next steps of their pathway. Many people experience feelings of anxiety and worry about their new condition, its treatment or its effects on appearance and it can be difficult to retain information and to decide which information is reliable when faced with a plethora of online resources.

Our new leaflet provides clear written information that a patient can go back to re-read, as well as introducing our community and contact information, so that no one needs to go through a vitiligo diagnosis feeling alone.  

Our Chairman Simon explained why a new version of the leaflet was so critical:   

The way society views vitiligo has shifted significantly since the previous leaflet was produced. We are seeing more and more people with vitiligo embrace and be proud of their unique skin. This was the message that we wanted to convey through our new leaflet. Language such as ‘disfiguring’ has no place in our media and resources – we want people to feel confident, informed and as optimistic as possible when going through their diagnosis.

We will be making the new leaflet available to healthcare professionals and you can also download a copy from our website. If you spot any copies of our old leaflet in your local medical practice then please let staff know that our new leaflet is available.

The Society receives business donation from Sarah Makes Bracelets

We want to say a big thank you to Sarah Makes Bracelets, a small home-based business run by Sarah from Manitoba, Canada. Sarah shared with us why she chose to support The Vitiligo Society: 

I want to do what I can to help raise awareness for vitiligo in addition to supporting those who, like myself, have vitiligo. I hope to be a positive example and voice in the vitiligo community.

I am a high school teacher and small business owner in rural Manitoba, Canada. I created my vitiligo bracelet sets as a visual nod to my spots and I am pleased that they’ve been well received by my supporters and that I am able to share profits from these sales with organisations such as the Vitiligo Society.

The Vitiligo Society is a small and dedicated team, so every gift we receive has a huge impact on helping us raise awareness of vitiligo, support people living with vitiligo and ultimately find a cure for the condition.

You can follow in Sarah’s generous footsteps! Just click here to visit our donation page and pledge whatever you can afford.

Find out more about Sarah Makes Bracelets by visiting Sarah’s website sarahmakesbracelets.com

US Food and Drug Administration (FDA) hold public meeting on patient-focused drug development for vitiligo

On 8th March 2021, the FDA is hosting a virtual public meeting on Patient-Focused Drug Development for Vitiligo. They are interested in hearing from people living with vitiligo, and people supporting those with vitiligo, on the impact of the condition on daily life and also views on treatment approaches.

What does the FDA do?

The FDA is responsible for public health in the US and is the regulatory authority for a number of areas including drugs and biologics. 

Does FDA regulation have a global impact?

The FDA has formal and informal relationships with their foreign counterparts. The FDA’s international programs have grown and its experts are often called on to direct, manage and coordinate the growing body of international work involving the World Health Organisation and International Conference of Drug Regulatory Authorities.

Why is it important to attend?

Wherever you are in the world this is a hugely important opportunity to:

Share the health effects and daily impacts of vitiligoShare your treatment goalsShare the decision factors you considered when seeking out or selecting a treatmentInfluence the future of vitiligo treatmentsDemonstrate the interest and need that our community has in new treatment development What format will the meeting take?

The meeting will take the form of a panel discussion covering a variety of topics. Organisers are now accepting responses to questions that will be discussed, and you can contribute to these as part of the event registration process.

How can I attend?

Sign up for your free place by visiting the FDA event page

OR directly via Eventbrite

University of Sheffield seeks participants for new research study

Psychologists at the University of Sheffield are reaching out to the vitiligo community to find participants for their new research study. The study seeks to understand whether a brief online writing intervention could help individuals living with visible skin conditions to improve their body image.   

The study comprises of three fifteen-minute writing tasks over the period of a week. Participants will also be asked to complete a series of questionnaires before and after the intervention.

In order to be eligible for this study you will need to be over 18 years of age and living with a skin condition that you feel negatively impacts on your relationship with your body.

If you would like to participate in this study, then please click here to read more information and sign up.

membership iconBecome a member and be part of our mission