Dermatomyositis – can you help?

The British Association of Dermatologists (BAD) are creating a new public-facing website for patients to help provide the advice and care needed when looking for or undergoing treatment.

As such, the BAD are looking to speak to patients who might be willing to come to London for a few hours, to film a short video that will be part of the website’s design.

The BAD would like volunteers to talk about their journey, from when symptoms first appeared through to the present day. This would include the patients’ treatment pathway, for example: Who did they see? What sort of treatments have they tried? What has helped?

They would also like volunteers to speak on the impact this has had on their lives, both physically and emotionally, however mild or severe.

Each edited video will last around 3 minutes. Volunteers don’t need to be ‘media trained’ or have any experience of being filmed at all, what is required is honest accounts from relatable people about their experience of skin disease and seeking treatment, both positive and negative.

As thanks for volunteering, volunteers who will go on to be filmed will receive £50 and travel costs will be reimbursed and the referring charity will also receive a donation of £25.

To apply, the BAD would initially like you to send a short video telling your story, so that the most appropriate stories are then filmed. No need for any professionalism; it’s recommended you send in a phone video for simplicity – quality and background are irrelevant. We won’t use the videos in any way and they will be deleted.  If creating a video on a mobile is not possible, they may be able to do a video call or normal phone call instead.

It only needs to be a minute or two long, and in your summary, you may want to include some details such as:

• the name of your skin disorder and what it is

• how long you’ve had it

• if the symptoms come and go or if they always the same

• a bit about your path to diagnosis (e.g. did you see a GP for a long time first, did you get referred to a dermatologist, did you have many tests)

• what sort of treatments you have tried and what has worked for you

• what’s it like living with your disease, either physically or emotionally or both

• any positive messages for someone who is recently diagnosed (with any skin disease), or advice for someone who thinks they have a skin disease but doesn’t know where to start seeking help.

Anyone who is interested in learning more before applying can contact the Communications Team at the British Association of Dermatologists by emailing or ringing 0207 391 6084.

The BAD is mindful that many people visiting the site may not even have a diagnosis yet, so responsible portrayals are needed. This means not terrifying people or making them feel seeking treatment is hopeless. For many diseases, help is available from NHS dermatologists – although this is not always straightforward. However, while the aim is to ensure not to deter people from seeking help, this is very much a platform for patients to share their own experiences without any agenda, so feel free to offer suggestions on what you’d like to share with other people who may be new to dermatology.

On behalf of the British Association of Dermatologists, we would like to say a massive thank you in advance to everyone that wants to take part in our project that will hopefully help so many people get the care they need.

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