This edition of InTouch is sponsored by Bullen Healthcare

for people whose skin doesn’t work we do

Making a difference by raising awareness

InTouchThe magazine for everyone living with EB 2018: Issue 1

Welcome

It is my pleasure to welcome you to 2018’s first edition of InTouch!

In th is i ssue. . .

I would like to start by personally thanking you all for the amazing achievements that happened throughout the EB Community in 2017.

With your help we have seen a great success with our #FightEB campaign, funded critical research, managed a range of wonderful events across the UK, witnessed a ground-breaking skin graft study that was shared around the world and helped open a state-of-the-art facility. Helped support over 2000 patients by helping fund EB healthcare services and over 500 Members received support from the DEBRA Community Support Team.

Following such a successful year, we will continue to grow our activities across all of DEBRA in 2018. With plans to hold more Member events, increase funding into pioneering research, champion initiatives to provide better EB care in local communities and extend media opportunities making sure our Members voices are heard.

Please do keep in touch with your ideas and feedback, we rely on you to help us to plan our activities. Thank you for your input and I look forward to hearing from you or meeting you during the year.

Claire MatherDirector of Healthcare, Membership and EB Community Support

The fewer the number of people who know about EB, means the fewer the number of people who want to do something about it – be it researching symptom relief and treatments or finding a cure.

Raising awareness is vital to helping everyone living with EB and has always been one of the key missions of DEBRA. This is why we are excited to focus this first issue of 2018 on spreading EB awareness!

From the big to the small, simple things can have a lasting impact.

Disclaimer: Some information within this publication has been written by people living with EB who have found certain products or services useful. DEBRA does not specifically endorse any product or service and will not be held responsible for any consequence arising from their use. Every effort has been made to ensure that the information in this magazine is accurate at the time of publishing.

Let’s keep raising awareness

Looking to the future

How a clinical trial programme works

Get out of debt

Taking steps in podiatry care

Family fundraising raises awareness

Equality in education

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InTouch 2018: Issue 1 3

Trustee Spotlight

Shaping the future

I first became aware of DEBRA shortly after the birth of our first son Finn who was born with EB, 15 years ago. The condition has been genetically passed down on my side of the family, and being a sufferer of the condition myself, I found out during my pregnancy that I had a one in two chance of passing the gene on.

My second son, born a year later, was also diagnosed with the condition. It was throughout both pregnancies, and during those first very daunting months as a new parent, that I really became aware of DEBRA and the support they deliver to EB patients. I was guided and supported by a team of specialist EB nurses and paediatric consultants who are part-funded by DEBRA.

DEBRA’s support to my family continued as the boys turned into toddlers and onwards. DEBRA has been a key player in helping them gain their independence and autonomy. The next step was a logical one, and I was delighted when the opportunity arose for election onto the Board.

After becoming a trustee for DEBRA, I soon realised that DEBRA’s boardroom gave me the opportunity to make decisions that would make a real difference to the lives of people suffering from EB. Confidence has allowed me to grow in the role so much so that last year I was appointed as Chair for the Fundraising and Communications Committee.

At DEBRA I was genuinely made to feel that my first-hand experience added real value to the organisation

and I now realise that my contribution is making a real difference. As a woman with two boys and a career, I understand the reservations that may come to those thinking they have nothing more to offer at board level. In a world where women are invariably underrepresented at board level, being a trustee for DEBRA has allowed me to harness first-hand experience of living with EB alongside my professional experience as drivers to make change.

I would like my personal journey to offer encouragement and possibility for women, especially those who are passionate about a particular cause, to consider trusteeship and use their strengths, ambitions and interests to make significant progress within a charity. My role has allowed me to champion female leadership whilst working in an area that I am extremely passionate about, and I am driven by a desire to raise funds for pioneering research for symptom alleviation and, ultimately, a cure for EB.

Become a DEBRA trustee

Dawn Jarvis, Company Secretary, has been with DEBRA for 20 years. She’s responsible for the running of the Annual General Meeting (AGM), as well as putting forward all applications to the Nominations and Governance Committee.

Dawn says: ‘Being a Trustee gives Members the real opportunity to make a difference and have their say on how DEBRA continues to work for anyone who lives with EB. DEBRA has always pushed to have a diverse board. With many of the current Trustee Board being affected by EB, it makes sure that the effect of the condition is never forgotten and we stay passionate about our mission.’

If you are interested in becoming a DEBRA Trustee or you just wish to find out more information on what the role entails to see if it may be something for you, then please contact Dawn Jarvis on 01344 467774 or email dawn.jarvis@debra.org.uk.

Becoming a Trustee is a great opportunity for any Member to be involved in making sure that DEBRA is meeting the needs of the EB Community. Your stories, experiences and views are vital for spreading awareness but also help to shape how DEBRA continues to move forward in the future.

By the end of 2020 DEBRA is aiming to spend...

Research Healthcare

Community Support International

Helping The EB Community

Please do take part and engage with us by sharing your ideas and views, taking part in our surveys etc. to help us ensure that we are utilising the funds in the best way to support you, the EB Community.

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How we aim to spend the money

Research

Strengthening our impact within the scientific community

Contributing to the strategy of cure(s), control and impact on quality of life

Identifying and working alongside new interests in EB research

Improving coordination of research within DEBRA’s and other funding groups

Healthcare

Funding for up to 25% of all clinical specialist EB nurses

Providing additional grants for developing the expertise within the specialist EB nursing teams

Developing the podiatry and nutrition services

Updating and creating new publications and films for EB education

Community Support

Increasing Membership numbers, communication and benefits

Giving more individual support grants and essential goods and services

Offering new or enhanced care and support

Holding more regional events and Member activities across the country

Raising EB awareness throughout the research and scientific community

International

Enhancing the communication and coordination between all DEBRA’s

Hosting the International EB Research and EB-CLINET conferences

Developing International Clinical Practice Guidelines

Helping The EB Community

EB research wins awardsIn November 2017 we were excited to share with you the ground breaking achievement that Michele De Luca and his colleagues successfully reconstructed skin covering approximately 80% of the total body surface area for a seven-year-old child suffering from Junctional EB. Although not a cure, this work is very significant in the field of research.

Following this, their achievement continued to make waves throughout the scientific community and Michele De Luca and his team were have since won The Stem Cell Researcher 2017 awarded by The Niche and The EURORDIS Scientific Award presented by EURORDIS.

Well done Michele to De Luca and his team!

DEBRA International is undertaking a long-term initiative to develop clinical practice guidelines (CPGs) for EB. They are designed to support and improve decision-making in patient care.

In 2016 DEBRA International consulted with the international EB Community on the priority areas for clinical practice guidelines, in order to guide the next steps. As a result of this, more clinical guidelines are being produced.

DEBRA UK supported six EB specialists; Jane Clapham, Michelle Wood, Tariq Khan, Rosie Jones, Lynne Hubbard and Caroline Mackenzie to attend the DEBRA International Conference held in New Zealand on 24 & 26 November 2017.

The conference provided an ideal opportunity for specialists to meet and work together face to face, as well as the chance to discuss CPG’s which are under development or have been created. This gives specialists the opportunity to bring back techniques and information to enhance EB patient care and support in the UK as well and raising awareness throughout the communities.

Michelle Wood, Specialist Physiotherapist at Great Ormond Street NHS Foundation Trust, said“The DEBRA International Conference gave me a great insight into other specialties thoughts and priorities in their treatment of EB. I learnt a lot from the podiatrists in attendance but also from the EB sufferer on the panel from New Zealand who talked about mobility and footwear issues areas that overlap my own specialty.

Personally it has been incredibly useful to not only attend these amazing meetings but is has been so valuable to make all these contacts around the world and have the opportunity to discuss patient care with other clinicians who work with EB”.

International News

DEBRA International 2017

Prof. Michele De Luca – credit copyright R.Hametner

From the left; Rachel Box, Kattya Mayre, Michelle Wood, Jane Clapham, Rosie Jones, Lynne Hubbard, Tariq Khan, Caroline Mackenzie

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Your voice, your stories

From news articles to video segments and radio interviews, there are a variety of ways that your experiences can be told and help others better understand the condition. EB is more than one person - it affects whole families, networks, local community groups, sports clubs, schools and more.

That is why DEBRA has created the Media Ambassador Scheme to empower the EB Community through telling their stories and helping others better understand the condition.

All DEBRA members are encouraged to register their interest in volunteering as a DEBRA EB Media Ambassador.

To raise awareness of EB through engaging with the media. Why not tell your story?

Jess is a DEBRA EB Media Ambassador and this is her story...

I suffered with blisters through High School without thinking much about it. It was only after I started spending a lot more time on my feet that it really became an issue.

It took visits to three different dermatologists to reach a diagnosis, but ultimately my local hospital referred me to the specialist EB Team at Solihull. They’ve transformed the way I care for my skin. I used to cut my blisters with nail clippers and just manage as I went along. The EB team showed me how to lance my blisters with a needle and what to do to minimise infection. Now I carry needles and dressings on me at all times, and change my socks a lot more often. Blisters on my feet heal a lot more quickly and my skin is generally much better.

I can get on with my life – since getting help from the EB Team, I’ve completed my degree in dance, climbed Kilimanjaro and now I’m a cheerleader for the

Bolton Wanderers. I also teach dance at a primary school, which is a great way to spend the day.

I want to do what I can to help others and increase understanding and awareness of EB.That’s why I became an EB Media Ambassador.

If you’re interested in becoming a DEBRA EB Media Ambassador, visit www.debra.org.uk/mediarep

Someone from the Communications Team will be in touch to provide additional information and discuss requirements for participating.

For all enquiries relating to this volunteer role please email our Brand Communications Officer, Miranda Lloyd, at miranda.lloyd@debra.org.uk

EB In The News

Research Update

How does a clinical trial programme work?In 2017, DEBRA worked with EB researchers on 17 projects. These included pre-clinical and clinical projects in their final stages providing final reports and conclusions. This helped researchers learn more about how they may move forward and also helped spread EB awareness throughout the scientific community.

How a clinical trial programme worksA pre-clinical trial is a stage of research which has to happen before a clinical trial can begin. During this phase important feasibility and safety data is collected before a new medicine is given to humans. Fact: Only 5 in 5,000 new drugs or treatments that enter preclinical trials progress to human clinical trials.

£3M

Phase I (Human tolerability)Phase I is the first stage of the clinical trial process and is primarily aimed at making sure that the new medicine is well tolerated. This important step identifies if there are any unexpected side effects. A small sample group of volunteers, usually healthy, are used within this phase or in some cases people who have no treatment options left available to them will volunteer. Fact: Roughly 7 out of 10 experimental drugs will pass this phase of testing.

Phase II (Product effectiveness)Phase II aims to see how effective the new drug or treatment actually is and quite often designed to see what dose or how much of a treatment should be given. The number of patients is increased in this phase and may be as many as several hundred. Fact: Most research projects fail in Phase II due to the new medicine not being as effective as anticipated with about 1 out of 3 drugs will be approved in this phase.

Phase III (Large-scale testing)Phase III clinical trials have a larger sample size spanning from hundreds to thousands of patients, depending on the therapy area. The primary aim is to study the results on a large scale to provide a more thorough understanding of the effectiveness, benefits and range of possible adverse reactions. Fact: Once Phase III is complete, a pharmaceutical company can request regulatory approval for licensing and make the new medicine available to treat patients.

Phase IV (Post licence)Phase IV studies are conducted after a drug or treatment has been approved for use. These studies examine things such as comparison with other drugs and treatments that are already available, monitoring longer term effectiveness, impact on quality of life and cost effectiveness. Fact: Phase IV can result in a drug or treatment being taken off the market or restrictions of use could be placed upon it

Disclaimer: All averages and figures have been collected based upon 13 studies found at ww.aspe.hhs.gov/report/examination-clinical-trial-costs-and-barriers-drug-development and rounded to the nearest whole number based on current information and global conversion rates.

£12M

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InTouch 2018: Issue 1 9

“First in EB” Phase II trial of Rigosertib for RDEB SCCDEBRA is providing a study grant of $557,842 (£399,003) for a Phase II trial of a drug called Rigosertib for the treatment of RDEB Squamous Cell Carcinoma (SCC) (a type of skin cancer).

A range of drugs were screened by Dr Andrew South and his team to evaluate their ability to target RDEB SCC. Rigosertib, a drug being tested in other types of cancer was found to be effective at inducing cell death in RDEB SCC cells without affecting the surrounding skin cells in the laboratory. The team also identified that Rigosertib inhibit the growth of RDEB SCC and showed no apparent toxicity in pre-clinical trials.

From these findings a study was proposed to investigate Rigosertib to assess its ability to target tumours and to investigate its tolerability in patients with SCC that is in its late stages in a small number of RDEB patients.

They are aiming to recruit six to ten patients with late stage SCC that has not responded to standard care (surgery or chemotherapy). Patients will be recruited in both Austria (Prof. Johann Bauer) and the UK (Prof. Jemma Mellerio) and will be coordinated by Dr South’s team in the US.

This will be a ‘first in EB’ clinical trial of Rigosertib and demonstrates the progress that research in EB has achieved in bringing treatments from the lab into the clinic for testing. DEBRA’s portfolio of funded research is laying the foundation for further investigation into finding cures, identifying treatments and ways of controlling EB and looking into ways to improve quality of life. This growing field of research has led to other organisations starting to invest in this area and helps to increase awareness.

Dr. Andrew SouthThomas Jefferson University, Philadelphia, US

Prof. Jemma MellerioSt John’s Institute of Dermatology, St Thomas’ Hospital, London, UK

Prof. Johann BauerParacelsus Medical University Salzburg, Austria

Research Update

Community Support

Community Support introductionDEBRA’s EB Community Support Team is on hand to offer a support, information advocacy and liaison service for individuals and families living and working with all types of EB.

All of the EB Community Support Team is fully funded by DEBRA. They’re here to solely to support any DEBRA Member. They can help with advocacy, assist with the process of claiming benefits, offer support with any significant life changes, be a point of call for family members and carers, guide you to get the best financial assistance and so much more.

As a Member, you are their client. The Community Support Team will always put your interests at the heart of everything they do. As the number of people requesting support has grown, we are pleased to announce that an additional Support Manager will be appointed, and once the vacancies are filled there will be a team of seven Community Support Managers.

While the team are not social workers, financial advisors or specialist benefit experts they do have a wealth of knowledge and experience to share!

Contact the Community Support Team at communitysupport@debra.org.uk

Community Support achievementsIn 2017, our six Community Support Managers based around the UK:

378home visits to Members homes

37,000miles by road and many more by train and plane

Travelled over

500members

Directly supported

over

We want to hear from you!We always want to hear from our Members to make sure that the information we are sharing is useful and tackles the real issues.

If you have any areas of advice which you would like to see in future InTouch issues or feel like any important topics are not focused on enough, the please contact us. This may include holiday travel advice, benefit regulations, care and support at schools etc.

To share your thoughts contact our Marketing Coordinator, Michael Greenwood, on 01344 771 961 or email michael.greenwood@debra.org.uk

111multidisciplinary clinics offering immediate support

Attended

Made

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A sad farewellWe are sad to announce that Miranda Hartley has left the Community Support Team to take on new ventures closer to her home.

Miranda has been a valuable member of the team for over four years and has been a strong support for many DEBRA Members. I would like to thank her personally for helping me settle into my role at DEBRA and always being there for everyone in the team with her expertise, knowledge and her wonderful ‘can do’ approach to any challenge!

We will really miss Miranda but everyone at DEBRA would like to wish her all the very best in the future.

I would like to reassure Members that the service that we provide will still continue. A new Community Support Manager will be appointed shortly. In the meantime, if you have any queries or questions then please contact myself or the team on 01344 771961 or email communitysupport@debra.org.uk

Louise Griffiths - Regional Community Support Manager

Community Support

Get out of debtThis time of year can be hard for everyone and debts can slowly mount up without you noticing or without much control. However, it is important to know that there is help out there and that you are not alone.

One service which DEBRA Members have used before is Step Change Services.

Step Change Services is a debt charity that is expert in helping people in debt and work with them and their creditors to manage and get out of debt. They offer free advice to help you get back in control of your finances and assist with the best management for your circumstances.

They also advise on Debt Relief Orders, Bankruptcy Debt Management Schemes and they will make a personal action plan specifically tailored to individual needs, assist with all template paperwork to send to debtors and contact them on your behalf to arrange a minimal payment plan. In some cases as little as £1 a month can stop interest and avoids bailiff enforcement.

They have a website, www.stepchange.org, which offers an online tool to get tailored debt advice in 20 minutes and also has a direct helpline if there are any questions about the process.

Members can also call the EB Community Support Team for information if they are struggling with their finances and/or their benefit entitlement has changed.

Membership

Need a well-earned rest?DEBRA provides a variety of holiday homes situated across the UK to offer all our Members an opportunity to take a well-deserved break at a highly subsidised rate.

Our holiday homes are there to provide you and your families with memorable holidays and vital respite. With five holiday homes nestled across four different locations throughout the UK you can create wonderful memories without the stresses of everyday life.

From the Brynteg Holiday Home Park, set a stone’s throw away from the picturesque Snowdonia Mountains, to the Waterside Holiday Park and Spa, which is situated just yards from the sandy beaches of Bowleaze Cove –we have a place for any type of holiday.

The recently purchased home in the Lake District is also open almost all year round allowing Members to visit any time they need a break!

To book now or find out more about any of our four holiday destinations across the UK, please visit www.debra.org.uk/holidayhomes or contact our Membership Team on 01344 771961.

Have your say on the perfect getawayFinding the perfect holiday destination can always be hard. From sandy beachside destinations to tranquil forest getaways, everyone has their own type of getaway which best suits them! That is why we always try to offer as much variety as possible to make sure we cater for every get away you could want.

Therefore, if we were in a position to purchase a new holiday home, what would make it the best destination for you?

To take part in our survey and have your say, visit www.debra.org.uk/holiday-home-survey-2018

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Membership

Don’t miss out on your discount!All our DEBRA Members are entitled to 10% off all products in our DEBRA high street shops. From sofas to suits and films to fans, there is a range of items across the UK which you can receive discount on.

All you need is your DEBRA Membership card. We have just released our new design!

To receive your newly designed DEBRA Membership card, contact our Membership Team on 01344 771961 or membership@debra.org.uk and they will have one sent out right away.

for people whose skin doesn’t work we do

DEBRA MEMBERSHIP CARD

All DEBRA Members receive a 10% discount in DEBRA high street shops.

Visit www.debra.org.uk to see all the current benefits of the scheme.A charity registered in England and Wales (1084958) and Scotland (SC039654).

Member name:Membership no:If any of your contact details change, please contact the Membership Team.

Contact Us

For all enquiries, please telephone us on 01344 771961

Email: membership@debra.org.uk

Become a volunteer or fundraise in your community

Join the EB Media Ambassador programme

Learn about other Membership benefits

Email: debra@debra.org.uk

Get in touch with your Community Support Manager

Email: communitysupport@debra.org.uk

REBoot updateREBoot (Research Epidermolysis Bullosa Orthotics) is a research project lead by King’s College London in collaboration with various other parties, looking to develop footwear/insoles/smart tech for people with EB. The aim is to co-design, develop and test novel footwear for people with EB to limit the damage that normal footwear causes to the fragile skin of their feet.

In 2017, DEBRA held workshops at our Members Weekend and AGM so all of you could give feedback and share your experiences to help explain problems with current footwear. This information was very important to help the project identify what would benefit people living with EB the most.

Subject to funding the REBoot Team will continue to work alongside people living with EB to develop and test new footwear for different ages and preferences. In addition to incorporating feedback they will measure heat, humidity, and pressure distribution using sensors. This information will guide new footwear and insole designs.

The next part of the project is in the application stages awaiting funding. Unfortunately we can’t say when a new product will be available as these things take time. It is however, great to have experts working for the needs of the EB Community with the potential of a product that may improve quality of life.

The REBoot Team is still be very keen to interact with the EB community and your views and opinions have been and will continue to be vital to help shape the project.

If you are interested please contact Helen Weaver, DEBRA EB Community Project Lead, on 07880 193118 or helen.weaver@debra.org.uk.

Get involved

Call for budding artistsWe are hoping to produce a children’s story book that explains EB and some of the challenges with a positive story about a Zebra called Debra! This book will be aimed at Children with EB aged 3-8 and their siblings, friends and schools.

We would love our members to be involved in the artwork and are looking for artists of any age, using any art technique (no need to be a Picasso), to produce the backdrop scenes for our characters to inhabit as well as lots of pictures of butterflies.

There will be a first draft reveal and story time at our Member’s Weekend and AGM on Saturday, 19 May 2018.

For more information and to find out how to get involved, contact Helen Weaver at helen.weaver@debra.org.uk or 07880 193118

Healthcare

Taking steps in podiatry careWe recognise the importance of specialised EB podiatry services and the positive impact on the quality of life. To date DEBRA UK has worked with all EB centres to support access to specialised podiatry services along with funding the development of the international clinical practice guideline’s in podiatry.

DEBRA created and is investing £105k for a Podiatry Project lead by Dr Tariq Khan, Consultant Podiatrist and Specialist EB podiatrist, to lead the development and awareness to offer the best quality of care to the EB community nationally. The aims of achieving this is by:

Raising awareness

Introduce EB to undergraduate podiatry students and add EB to podiatry curriculum at universities. Communicate to other healthcare professionals the importance of Podiatry for EB patients.

Training

Developing an accredited educational programme for podiatrists, to develop the skills in EB management. Workshops could become part of the annual college of podiatry conference as well as regional training events. Also by supporting the EB podiatrists at the national centres in the UK by helping to develop and coordinate activities.

Clinical practice guidelines

Create a national EB podiatry framework in EB Podiatry management from the International clinical practice guidelines. This will be used later for training and clinical practice.

Collaboration

Increase links with NHS and local/private services across the UK and evaluate where a need for the service is essential for EB communities. Develop relationships with professional bodies and seek out accreditation for the guideline and framework.

Expansion of podiatry services across the UK

Train local podiatrists near EB patient communities, so local podiatry management can be available to the patients in between visits to the EB national centres.

Product evaluation

Help to evaluate new products and treatments emerging onto the market and assess their benefit in EB podiatry care. To also spread any information widely across the UK.

The project began in September 2017 and will run over the course of the next three years. Dr Khan has already been able to confirm support from the College of Podiatry (Society of Chiropodists and Podiatrists), which will further enable us to reach all registered podiatrists in the UK.

Dr Tariq Khan

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Healthcare

Helping to provide careWith our Members help and support, DEBRA was thrilled to provide a significant contribution of £250,000 towards the first Rare Diseases Centre at St Thomas’ Hospital, London, and lead the way in securing funding for its creation.

This Centre, for the first time, is bringing together all the services, healthcare professionals and facilities necessary to meet the complex medical requirements of adults living with EB in one central facility.

St Thomas’ is already home to one of four EB Centres Of Excellence where specialist teams already provide a gold standard level of expert care and support, including nursing, dietary, podiatry and physiotherapy services to adult EB patients. DEBRA funds up to 25% of the salary of each specialist EB nurse so they can undertake work not funded by the NHS, but crucial to enhancing the lives of people living with EB.

DEBRA’s funding also ensured that the new Centre is a modern and positive space to visit and spend time in. Large consultation rooms enable more than one family member to be seen at a time by the various specialists, transforming the hospital experience. A state-of-the-art video conference suite allows clinicians to work more closely with patents’ local health services across the UK and also enables experts to share best practice around the world.

Other centres & facilities across the UKSolihull Hospital – State-of-the-art facilities have recently been built at Solihull Hospital to provide the high level of service they promote for all their patients is provided. The development gives patients access to more localised specialist care without the discomfort or stress of having to travel to more distant facilities.

Birmingham Women’s and Children’s Hospital – A Rare Diseases Centre has also been developed at Birmingham Women’s and Children’s Hospital to provide much needed care. Although the EB service won’t be based there due to practical clinical reasons they will have a larger clinical space made available to the service.

Great Ormond Street Hospital – Great Ormond Street Hospital are in the process of developing a Rare Diseases Centre. It’s hoped that the EB service will benefit from the new facilities. We will keep Members updated as the project moves forward.

You can download a PDF version of directions to the Rare Diseases Centre based in St. Thomas’ Hospital using the below address: www.guysandstthomas.nhs.uk/resources/building-maps/south-wing/south-wing-1st-floor.pdf

Member To Member

Equality in educationAs with every parent the thought of giving your child over to schools and teachers was a prospect filled with fear and trepidation for us. Scarlett was very delicate and vulnerable, and as an only child, not at all used to crowds of other, very active and boisterous children.

Living in a relatively small community helped because just about everybody in the village was aware of Scarlett’s condition by the many fund-raisers local people had been involved in since learning of EB. Up to that point very few had heard of the condition or knew anything about it. Now there are more who know than don’t.

Yet despite all of this the start of her school life was a fearful and distressing time for us as parents.

As it turned out it need not have been. Crick Primary School has, long before the first day of Scarlett’s school life, been open to ours and Scarlett’s needs and greatly pro-active in regard to her safety and other children’s awareness of her condition and vulnerability.

With the guidance of South Warwickshire Community Children’s Nursing team the school has been able to successfully yet unobtrusively set aside an area of the yard, which is worryingly entirely laid over to tarmac, where Scarlett can play safely with her friends and where she can feel less vulnerable than otherwise. For the first two years this was restricted to Scarlett and a couple of her very closest friends who were chosen by her on a daily basis. ‘Scarlett’s Area’ soon became the in-demand place to be and she became very popular indeed! Despite the fact that everyone knows there is a strict no running policy and that gentle play is what is expected, there are always queues to join her. It has helped Scarlett feel more included in play times and lunch breaks. Perhaps understanding Scarlett’s needs has helped other children become more aware of their responsibilities to one another in general.

Emily Parry of South Warwickshire Community Children’s Nursing team has been with Scarlett from pretty much the day she was born so was just the person we needed to get the ball rolling. Along with all of Scarlett’s medical needs while at school, it was Emily who became the driving force behind educating, supplying support for and encouraging the school staff beyond teaching to a greater understanding of Scarlett’s welfare. She regularly goes to give updates and advice to the staff, to address the other pupils and generally ensure that everyone involved has an understanding of what it is to live with EB, whether you have it yourself or not.

As a result there is not a single child or member of staff in the school who is not aware of Scarlett’s condition and EB in general. But, possibly most important of all, each and every person in the school realises that EB is simply a part of what Scarlett lives with and is NOT a defining factor.

Article written by Katie & Glen McCallion – DEBRA Members

Awarding those who deserve it EB does not just affect the person living with the condition. DEBRA knows that our Members community is full of amazing stories, achievements and people. That’s why we think they should be recognised for everything they do! From local support groups who fundraise at every opportunity, nurses that go above and beyond or to all the children who never lets EB define them. We want them to be awarded for their hard work and perseverance.

If you know any local or national award groups and a very special person in your life that you feel should be nominated to receive the recognition of how they change yours or others’ lives, then please contact us with your story. For all enquiries relating to nominating a person or sharing your story, please email our Brand Communications Officer, Miranda Lloyd, at miranda.lloyd@debra.org.uk.

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InTouch 2018: Issue 1 17

My first tattoo with EB SimplexSome of you reading this will already have tattoos or you may want to get one. I certainly did! I was more unsure about what my Nanna would say, rather than how my skin was going to cope!

Below is a check list I created to show what I did and went through to get my first tattoo. I hope it can help you come up with some ideas or shine light on the procedure you may have to go through.

Check out a few parlours Check out your local (or not so local) tattoo parlours. Visit a few and see their hygiene and maybe ask if you can watch someone’s appointment so you know what to expect.

Member To Member

1Be honest about your skin Tell them a little about your EB, be aware you skin might rip as the needle punctures it and could blister (none EB skin blisters so don’t be surprised if yours does too). 2

Choose a design Choose a design that means something to you. I had a few in mind but went for 3 of the Marauder’s Map footprints from Harry Potter, as it has many meanings to me.

3

Get a skin test doneAs your skin is more special than other people’s, a skin test is good idea! Ask the artist to try different voltages (how fast the needle will move) and they will use water rather than ink. It will give you an idea of what the tattoo will be like but will just leave a scratch on your arm that will heal up.

Book your appointment Choose a date and time that suits you, always try to make sure you get enough time if you need a break. Be aware that doing your tattoo in a few sittings isn’t a bad thing, it’ll give your skin chance to heal and you might get a better overall piece by the end of the process.5

Get your tattoo It will hurt and feels like pain you get from a burn. It will also most likely bleed, not a lot, but it will. Under the inevitable cling-film wrap it’ll look like an absolute mess… don’t worry, it will get better!

Let it heal It’ll itch like crazy, will be raised on your skin and at some point it’ll start to peel. The most important thing is just to leave it alone! Let it heal naturally to stop it from scarring or from getting infected. Put the recommended healing gel/cream on it too.

Show it off Now you’ve got it, flaunt it! Show your friends, your family (as long as they’ll be nice, it’s been 4 months and my Nanna still doesn’t know… I’m not hiding it, just not pointing it out to her) and let the tattoo parlour see how it healed. You are possibly the first person with EB they’ve met!8

6

Article written by Heather Bailey – DEBRA Member

This article was written by one of our DEBRA Members. Their experience may differ from yours. If you are thinking of getting a tattoo please talk to your EB nurse specialist as everyone’s skin may react differently and results and trauma may vary.

7

4

A trip to New YorkWhen my daughter Heather was 15 we decided to take a trip to New York with a group of friends. We had a brilliant flight and were going through the entry channels at the airport when we suddenly realised that everyone was being fingerprinted and having eye recognition done.

As Heather has no fingerprints and a dodgy eye we were ready to explain. However, the official became very confused, asking if she was an amputee. Not able to find anything on his system, we were sent to the airport police section. For those old enough, it reminded me of `Hill Street Blues` with 4 police personnel sitting behind a high desk.

They all leaned forward and said `What have you done? ` Heather burst into tears and an important looking police official emerged from his glass office and ushered us in. Heather calmed down and we

explained the situation, handing him one of our DEBRA leaflets. We left the section through a police guard of honour all wishing us a nice stay!

Meeting our friends at the carousel to collect luggage there was a huge security guard holding the box of gastrostomy night feeds on one hand, high in the air, saying ‘Who does this belong to?’ My friends all pointed at me! After questioning as to whether it was bird feed, Heather, in frustration lifted her top to expose her gastrostomy peg and said ‘It`s for this!’ A shocked security guard wished us a nice stay and we were on our way.

We had a fabulous time with helpful people and were able to laugh about our entry into NY, giving us a good story to share!

Wendy Skerry – DEBRA Member

To celebrate 40 years of DEBRA we will be producing a special edition of InTouch and we want to include your advice. All we need from you is to think what a top tip you may have found out yourself or heard from others, in ways to make your EB more manageable.P Have you found a handy hack that really helps your blisters? P A savvy suggestion to keep your bandages cool?P Instruction on how to master your make up?P Or a great little gadget that makes your life easier?

Let us know what works for you and you could be featured in our next InTouch issue. To get in touch then contact Miranda Lloyd on 01344 771961 or email miranda.lloyd@debra.org.uk.

Member To Member

We need your top

tips..

18 www.debra.org.uk

InTouch 2018: Issue 1 19

Design the next InTouch front coverWith DEBRA celebrating its 40th birthday this year, we will be releasing a special issue of InTouch to celebrate everything DEBRA and the EB Community has achieved!

To make the issue extra special, we want one of our Members to design our next front cover.

Does your child love to draw on everything? Are you doing design at school/college/university or do you just see yourself as the next undiscovered Picasso? We want to hear from you!

To enter this competition, all you have to do is send in a design you feel like celebrates what has been achieved by DEBRA and the EB community over the past 40 years and send it to us.

All designs can be either emailed to our Marketing Coordinator, Michael Greenwood, at michael.greenwood@debra.org.uk or posted to DEBRA head office: DEBRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire, RG45 6LS

All designs must be received by Friday, 6 April 2018 and our winner will be announced on social media on Friday, 4 May 2018.

Stuck for ideas? See our example below to get you started…

InTouchThe magazine for everyone living with EB 2018: Issue 2

Member To Member

for people whose skin doesn’t work we do

Happy 40th Birthday DEBRA

Volunteering & Fundraising

Family fundraising raises awareness

Michael and Veronica, Daisy’s parents, held their first fundraising event at Holt Community Centre, with the help of Daisy’s granddad. It was a table top sale and raised £30 for DEBRA. Since then they have continued fundraising in their local community and have now raised an incredible sum – over £50,000!

‘We receive many donations of items to sell on our stalls from family and friends. There are not many weeks that pass without us holding a stall for DEBRA. Daisy and her brother Joseph join in – as does the rest of the family, raising money and awareness of the condition. We had never heard of EB or DEBRA before having Daisy, but now we have certainly raised the awareness of EB in the local community,’ says Michael.

‘The local community have been brilliant in their support for our fundraising. Over the years we have been helped by the local Rotary Clubs and Masonic Lodges, local schools and businesses. We have clever ladies and grandmas who knit and sew the most wonderful crafts for us to sell. Without all the kind donations, we wouldn’t be able to hold so many events, so a big thank you to everyone.’

Hugh Thompson, Director of Fundraising and Communications at DEBRA, recently visited the Pearsons to personally thank them for their incredible efforts over the years. Their story is a remarkable one of local, regular fundraising that has both raised a huge amount of money and raised awareness of EB in the local community.

The Pearson family from Holt in North Norfolk have been raising money for DEBRA for 10 years. Daisy Pearson turned 12 in August and has EB Simplex.

20 www.debra.org.uk

InTouch 2018: Issue 1 21

Get involvedLast year we saw an amazing response from all our Members and were blown away with how inventive everyone got to raise funds within their local community. On top of this we were able to release our #FightEB campaign in October and again we witnessed just how strong the EB community across the UK is as everyone pulled together to spread EB awareness and help achieve £100,000 before Christmas – which we managed to exceed.

However, the fight is not over! #FightEB is now looking to reach £250,000 before Rare Disease Day on 28 February 2018.

If you want to get involved then contact the Fundraising Team on 01344 771961 or email fundraising@debra.org.uk

Meet the teamWith over 20 years’ in the charity sector, Hugh has experience working with children and adults from all types of backgrounds. After meeting a few families living with EB and finding out the real impact the condition has on everyone involved, he decided that moving to DEBRA would be an opportunity to try and make a real difference for people suffering from the condition.

‘It’s been an absolute pleasure and a privilege to meet DEBRA Members and learn more about the EB Community as a whole. I have been really impressed by just how supportive all our Members been especially with our #FightEB campaign which launched in October 2017. Their efforts helped us achieve £120,000 before Christmas and they continue to get behind the campaign to help us reach a record breaking amount for DEBRA. I’m honoured to be involved in raising EB awareness and helping to make a difference for everyone living with the condition.’

Fun facts...

Hugh Thompson, Director of Fundraising and Communications

Volunteering & Fundraising

24DEBRA fundraising events!

In 2017 we held

1000committed shop volunteers across the UK

We have over

21based from Crowthorne to Blantyre

The DEBRA Fundraising and Marketing Team is made up of

passionate and slightly crazy people,

fun-filled

Company support

For over 160 years Bullen Healthcare has been trusted by our customers to deliver life-changing wound care products, dressings and medication prescriptions. The service we provide to our customers living with EB was set up in 2008 with the help of patients, families and clinical teams to ensure that we offered the best service we could.

Making sure you’re happy with our serviceBullens has been working with DEBRA since 2008. It has allowed them to support DEBRA and Members with holiday homes, Member days, patient meetings, nurse meetings, fundraising and ongoing annual support. Bullens will also be hosting a DEBRA Members’ event at their head office in Liverpool later this year. The date to be announced.

What one of our customers says...“Bullens has made my life so much easier. They came on the right day and delivered exactly what I asked for. What’s more, when I go to the DEBRA caravan in Weymouth, they will deliver there what I need for our holiday! I could even get my order sent abroad if I wanted for no cost.”

Some of the people behind the service

Dedicated personal advisor

Your dedicated advisor (like Lesley or Kara) can get help with medical and non-medical issues, put you in touch

with clinicians and support charities, fight your corner or just be a friendly voice to share your day with.

Pharmacy team

We have an independent pharmacy team (like Nat), with an expertise in EB, who work alongside your

personal advisor to ensure you get the medication you need.

Prescription chaser

Our prescription chasers carry out a full review with your surgery to

confirm what is and isn’t due. Any missing dressings or medications

are confirmed with you.

Precision picker

Making sure you get the right product at the right time is

fundamental to us. Your precision picker makes sure each and every order is hand-picked, scanned and

then checked.

The van man

Bullens has a team of dedicated drivers (like John) who know each of our members ensuring deliveries

are made by a trusted, friendly face.

For more information on Bullen Healthcare please call 0800 756 2428, email info@bullens.com or visitwww.bullens.com22 www.debra.org.uk

InTouch 2018: Issue 1 23

EB ‘get togethers’

A Christmas ‘get together’In December 2017 one of the events was sponsored by Berkshire Carers Services a charity which helps to provide carers to those who need them in the Berkshire area.

A small group of carers and people living with EB had a meal and the opportunity to get to know other people in their local area. This small, fun, informal event was really successful and received great feedback! Being able to get to know each other and share the common highs and lows of living with EB or caring for someone with EB was an important success of this get together. DEBRA would like to thank Berkshire Carers Services for making this possible!

DEBRA plans for more get togethers around the country in 2018 to give as many of our Members the opportunity to meet up and share their experiences.

If you require additional support as a carer, please contact the EB Community Support Manager in your area, details on the back of the magazine. They understand the pressures of caring for someone with EB. To see if you have a local group like Berkshire Carers Services, please google “carer’s support and where you live”.

EB ‘get togethers’ offer the opportunity to meet other people in similar circumstances and access and exchange support and information. In 2017 DEBRA hosted regional events including, Edinburgh, Glasgow, Aberdeen, Solihull, Oxford and Reading.

The format of events varied depending on the number of people in the area attending or the purpose of the meeting. Feedback was very positive from all of the events, we are therefore finalising a calendar of events for 2018 to include York, Liverpool, the Midlands, Edinburgh and other locations throughout the UK.

A full programme of regional meetings will be shared on the website and invites sent once dates and venues have been confirmed.

Invites to regional events will be extended to other members outside of the region, depending on space. We aim to go to different locations over the next few years.

We are also still excited to hold our Members Weekend and AGM, the largest EB social event in the UK, on Saturday, 19 and Sunday, 20 May 2018.

Many of our Members have said they would like to meet people locally to them and we are looking at ways of how we can help establish local groups. If you have suggestions on how to develop these groups please contact Hazel Ewens, Membership Manager, at Hazel.Ewens@debra.org.uk

Useful NumbersDEBRA Office 01344 771961

Director of Healthcare, Membership and EB Community Support – Claire MatherMembership enquiries 01344 771961Membership Manager – (all projects and enquiries linked to Membership) Hazel EwensMembership Administrator (inc. holiday home bookings) – Sharon ClintonMembership Administrator – Sandra WelfareBrand Communications Officer (Member communication enquiries) – Miranda LloydFundraisingFundraising Team – Ailsa Winter, Jack Schofield, Sara Goodman, Lucie Robson 01344 771961EB Community Support North of England, Wales, Scotland and NI Regional Manager – Sondra Butterworth 07920 231271Central England and Wales Area Manager – Zainib Hussain 07920 231270Scotland and North East England Area Manager – Beth Davenport 07917 230105South of England Regional Manager – Louise Griffiths 07747 474454South of England Area Manager – Rowena Hamilton 07747 474051Community Project Lead – Helen Weaver 07880 193118

HealthcareChildren’s Nursing Service – Great Ormond Street Hospital 0207 829 7808EB Clinical Nurse Specialists – Katie Pleavey, Lois Pendlebury, Harriet EagletonService Co-ordinator – Sonia AmaChildren’s Nursing Service – Birmingham Women’s and Children’s Hospital (out of hours emergencies only: ask for the dermatologist on call stating that this is an EB child)

0121 333 8224

EB Clinical Nurse Specialists – Dawn James, Victoria Lynne, Danielle CunningtonAdult Nursing Service – St Thomas’ Hospital 0207 188 0843Lead EB Clinical Nurse Specialist – Jane Clapham 07775 648472EB Clinical Nurse Specialist – Chris Bloor 07554 223358EB Clinical Nurse Specialist – Annette Downe 07786 850684EB Clinical Nurse Specialist – Caroline Mackenzie 07833 401838EB Clinical Nurse Specialist – Karen Snelson 07786 850683EB Clinical Nurse Specialist – Catherine Nye 07825 273368Service Co-ordinator – Frances Skehan 0207 188 0843Adult Nursing Service – Solihull Hospital 0121 4245232EB Clinical Nurse Specialist – Tracy Adni 07846 986987EB Clinical Nurse Specialist – Kal Begum 07966 801710EB Clinical Nurse Specialist – Bryony Jay 07816 341465EB Clinical Nurse Specialist – Carol Knowles 07527 679679Scottish Healthcare Team 0141 2118773EB Clinical Nurse Specialist (adults) – Debbie Johnston 07772 628831EB Clinical Nurse Specialist (paediatrics) – Sharon Fisher 07930 854944Administrative Assistant – Tracy Scott (Mon – Wed, 9am – 3.30pm) 0141 211 8773

In an emergency call 999. Out of hours for urgent medical help contact NHS 111 or your GP.If they require further information about your condition they should be advised to speak to the on call dermatology registrar at your specialist centre for EB. To contact the EB nursing teams by email please visit www.debra.org.uk/nursingcontacts.

DEBRA, DEBRA House, 13 Wellington Business Park, Dukes Ride, Crowthorne, Berkshire, RG45 6LS.Email: membership@debra.org.uk Web: www.debra.org.uk

Follow us on /DEBRACharity @CharityDEBRA @CharityDEBRAA charity registered in England and Wales (1084958) and Scotland (SC039654). Company limited by guarantee registered in England and Wales (4118259).