Skin Deep - Psoriasis Documentary Opportunity

[HayleyA]

Hello All,

Please take the time to read through the information below, I have seeked permission from the administrator and I truly believe it is a great opportunity for you all.

My name is Hayley Arnold and I'm a student at The University Of Winchester entering my final year. I'm also the daughter of a psoriasis suffer who has had psoriatic arthritis and plaque psoriasis for nearly 30 years.

Skin Deep is a documentary that I'm making about psoriasis sufferers that focuses on people's experiences and stories of the condition. Whilst also addressing how the condition effects their lives and that of their relatives and loved ones. I hope the documentary will be a positive experience for those who take part. The aim of the documentary is to raise awareness of the condition and the need for better emotional care for patients and their families. The documentary is also looking at the bigger issues surrounding the disease such as care, lack of emotional support and the continued research into looking for better treatments, a cure and understanding the condition. I also hope to speak to dermatologists on what treatments are available to patients and the condition itself.

My main aim is that the documentary will raise awareness for the condition but I also hope that it will be a film of inspirational stories and experiences that will help other suffers understand their condition and themselves better. I also believe it will help families and partners to understand their loved one who lives with the condition.

I hope that by posting here other people living with psoriasis's will find the confidence to speak out, share their stories and demand better care and treatments that you so rightly deserve. People that have worked me on this project were nervous at first but have soon found a new confidence in themselves. Having grown up around psoriasis I'm not afraid of the condition and fully understand that you will be nervous and apprehensive but I assure you once we get chatting it'll just be like talking to a friend who cares and understands

I'd like to stress that no one will be pressured into taking part or asked to do anything they find uncomfortable.


You can find more information about the documentary here "Link removed as the project is dead" and you can view my personal website here "Link removed as the project is dead" If you do have any questions or concerns then please don't hesitate to contact me.

I hope you can see the passion behind this project and the respect that I have for people living with psoriasis.

I hope to hear from you soon and thank you for taking the time to read this.

Hayley Arnold

*EDIT by Fred: It looks like the idea has gone to the wall, and the above links no longer work so I have removed them.
If it does ever get going again please let me know.

[Fred]

Hello Hayley, glad you got here in the end. I have made an edit to your links so they work as a thank you for including Psoriasis Club on your website. I hope you get some feedback and would you also keep us updated on how it is going?

I'm happy to answer your questions if it helps, but I do live in France so a meeting is not possible and I personally wouldn't want to be on film. I hope you don't mind but I have posted your promise from your website below as it may help some readers in making a decision to contact you. Good Luck with it

Quote:

---

My Promise To You

​I understand how self conscious someone with Psoriasis can feel and that it can be embarrassing to talk about. Under no circumstances will you be asked to do something you feel uncomfortable doing. Having grown up around a psoriasis sufferer nothing will shock me. This documentary is a sensitive subject I do not wish to exploit or make participants feel uncomfortable. If you don't suffer from psoriasis and are taking part to speak about what it's like living with, caring for, growing up around a psoriasis suffer this also applies to you. No participant will be pushed to answer a question or speak about something their not comfortable with.

Should you decide to become involved I'd like to meet you before we even begin filming so you can get to know me and we can discuss what your comfortable with. It's also an opportunity for you to raise any questions or concerns that you have.

In this documentary I hope to raise awareness of this disease and to encourage people to change their perceptions. I also hope that for the people that take part it will help them in some form, whether it's just as simple as gaining a new confidence or acceptance with their condition or gaining a better understanding of the condition a loved one deals with.

This documentary is also going to be an experience of learning for myself. I hope that by meeting other sufferers I'll be able to understand the condition that I might develop and my dad has lived with for many years.

I hope that if you want to take part in this documentary you contact me, even if your thinking about it or unsure, please get in touch I'm sure I can put any concerns you have to rest. I understand it can be a difficult subject to talk about but I promise you that if you decided to participate you will be treated with nothing but respect and represented fairly.

[Caroline]

Beautiful site you have Hayley!

Well I cannot, like Fred, be a part of your movie as I live in Holland, I guess that it is a lot easier to find someone over in the UK.
There are several writers on the site like Hanna or Sue or KyPrincess or Troll (that would be a joke) that might be willing to cooperate in a film on psoriasis.

Good luck in finding them!

Caroline

[Fred]

KyPrincess or Troll

Caroline

KyPrincess is in the USA, and as for Troll no one knows where It She lives.

I will put something in the next Newsletter, that may help.

[Caroline]

KyPrincess or Troll

Caroline

KyPrincess is in the USA, and as for Troll no one knows where It She lives.

I will put something in the next Newsletter, that may help.

I will take a look outside on the fence, maybe It She is sitting over there...

[Hanna]

Well I'm Sussex close to Kent

I've not looked on your site yet but I'm open to the idea.......although I am about to "pop" so a lot would depend on timing and how baby behaves

[HayleyA]

Hello Everyone,

Fred: Thank you for making my links clickable and thats absolutely fine I don't mind at all. Of course I'll keep you all up to date. Thank you for being so welcoming and helpful. Thank you for offering to answer the questions I have a few if your interested you could answer from a research point of view, if you have the time? If you don't want to post the answers here just drop me an email. I know there are a quite a few please don't feel like you have to answer them all.

- As a person living with psoriasis what topics would you like to see in a documentary?
- Are you aware of the current Psoriasis Mandate campaigning for better care and support in europe?
- Have you ever watched a documentary on psoriasis before? If so what was it? Did you find it helpful/interesting?
- From your point of view, would watching people with psoriasis sharing their stories help you in anyway?
- I'm interested in the effect the condition has on family units, do you think your psoriasis has effected your relatives, friends partners etc in anyway ?
- Do you think you relatives, friends, partners understand what you experience on a day to day basis?
-Do you think a documentary like this might help them to understand you and you to understand them and how they view your condition?
- Do you think more documentaries like this need to be made to raise awareness of the condition in order to educate people so they gain a better understanding?


Caroline: Thank you so much for your feedback on the website I'm glad you like it. If I had the money I would be travelling everyone to explore psoriasis in different countries and cultures however being the poor student that I am its not possible :( However if you have the time I'd really appreciate if you could answer the questions above. You don't have to post the answer here if you don't want to you can send me an email. I know there are a dew please don't feel like you have to answer them all.


Hanna- Thank you so much for showing an interest. Congratulations! I've just read your email and will answer your question via that.


Thank you all for being so helpful and welcoming I really appreciate it

Hayley (:

[Fred]

As a person living with psoriasis what topics would you like to see in a documentary? The psychological side should be covered more. The history of treatments would be interesting.

Are you aware of the current Psoriasis Mandate campaigning for better care and support in europe? I have just gone through some past threads on here as I'm always posting psoriasis news. I have found a few threads I started about care and support, but can't find anything specific about a Europe Mandate. So No!

Have you ever watched a documentary on psoriasis before? If so what was it? Did you find it helpful/interesting? No but I did think the Singing Detective portrayed it very well.

From your point of view, would watching people with psoriasis sharing their stories help you in anyway? No it wouldn't actually help me, but I would be interested in watching it.

I'm interested in the effect the condition has on family units, do you think your psoriasis has effected your relatives, friends partners etc in anyway ? Yes see this thread: Living with Fred

Do you think you relatives, friends, partners understand what you experience on a day to day basis? No

Do you think a documentary like this might help them to understand you and you to understand them and how they view your condition? Yes

Do you think more documentaries like this need to be made to raise awareness of the condition in order to educate people so they gain a better understanding? Not to many as people could get fed up with overkill. We currently have to many psoriasis awareness campaigns going on in competition with each other at different times of the year.  




 

[HayleyA]

Thanks Fred ! I really appreciate it

The mandate can be found here if you interested in having a read and signing it "Link removed"
Thanks for all of your help.

[Fred]

Thanks Fred ! I really appreciate it

The mandate can be found here if you interested in having a read and signing it Link removed

Thanks for all of your help.

Oh that one, No I wouldn't have put that on here as it's run by Janssen a drug manufacturer see here: Should Drug Manufacturers run help websites for psoriasis? and I want this site to remain as independent as possible. I do report on the drugs but not on their publicity.