11094435908632364994308624

  Rare Revolution Magazine
  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
    • PEO Series
  • APP & Downloads
  • Media

RARE INSIGHTS

Why we’re helping people with albinism to stand strong

10/6/2019

0 Comments

 
GUEST BLOG
Picture
The prejudice and struggles facing people with albinism are sadly as present as ever in 2019…
Roselle Potts, Chair of the Albinism Fellowship www.albinism.org.uk
As a rare genetic condition that affects people’s eyesight and gives them distinctive pale hair and skin, albinism brings its own specific challenges.
​
Society has rightly moved forward in terms of recognising the rights of people with disabilities in the last few years. And there has been greater effort made to acknowledge the special problems experienced by people with albinism from ethnic minority backgrounds, including by the Albinism Fellowship. But more still need to be done.

It is true that our members in the UK and Republic of Ireland don’t suffer the extreme prejudice and live with the risk to their lives that people with albinism in parts of Africa must face. But life can still be a daily struggle.

For parents with a newly diagnosed child with albinism it can be difficult to access the correct support from the NHS.
Since albinism is such a rare condition – we estimate just 3,000 people live with it in the UK and Ireland – it may not even be diagnosed correctly.

And if parents do get the right diagnosis, they may still hear urban myths such as “you’ll never be able to take your child on holiday in the sunshine” (simply untrue, but parents need to travel prepared with shades, Factor 50 sun cream and a wide brimmed hat) or “they will never be good at sport.”

This is where the Albinism Fellowship comes in; as a positive and sociable volunteer run charity we are the only national charity in the UK and Ireland that exists to support people with albinism and their families. We are planning to launch our new website on 13 June 2019, at www.albinism.org.uk. Here, people can find out how to join the Albinism Fellowship and obtain a useful booklet called ‘Understanding Albinism’.
​
When the child with albinism starts at their local primary school, there may be a lack of availability of magnifiers to help them see textbooks. Or no teaching assistants available.

While we hear encouraging stories of fantastic teachers and schools supporting kids with albinism, we also still hear disturbing stories of teachers simply not understanding albinism. Or being willing to provide extra support.

Since this is 2019, this factor is simply not acceptable in a developed country like the UK – imagine the sheer distress the child and his or her parents experience as a result. At our Adult and Family Weekend Conference being held from 18-20 October 2019, we will have expert speakers on education rights and mobility as well as loads of fun activities for children and teens with albinism and their siblings.

Adults with albinism experience their own battles throughout their own lives, too. This can be misunderstanding of their condition, prejudice or the lack of access to the same career opportunities that their fully sighted peers would enjoy.

We will be hosting bespoke sessions again for adults with albinism including discussion groups during our conference this October. This will be a brilliant weekend with the theme ‘This is Me!’ to encourage all people with albinism to be confident in who they are.

The Albinism Fellowship will continue to help people with albinism “still stand strong” – in keeping with the theme of this year’s International Albinism Awareness Day.
  • On International Albinism Awareness Day, Thursday 13 June 2019, please use social media to show your support to people with albinism around the world. Use the hashtags #IAAD and #IAAD2019 and tag the Albinism Fellowship (@Albinism) and we can share your messages across our networks
  • In conjunction with International Albinism Awareness Day, the Albinism Fellowship’s summer barbecue and get-together will be in Carshalton, Surrey on Saturday, 15 June from 11.30am-3pm. The event gives people with albinism and their families the chance to socialise, catch-up with news from the Albinism Fellowship and enjoy some tasty food. This year, the summer event is at a new venue, the Church of the Good Shepherd, a short walk from Carshalton Beeches railway station. People attending should bring their own food for the barbecue. Attendance is free, but please confirm first with chair@albinism.org.uk​ ​

0 Comments

Your comment will be posted after it is approved.


Leave a Reply.

    Author

    Rare Revolution Editor

    Archives

    February 2021
    January 2021
    December 2020
    November 2020
    October 2020
    September 2020
    August 2020
    July 2020
    June 2020
    May 2020
    April 2020
    March 2020
    January 2020
    December 2019
    November 2019
    October 2019
    September 2019
    August 2019
    July 2019
    June 2019
    May 2019
    April 2019
    March 2019
    February 2019
    January 2019
    December 2018
    November 2018
    October 2018
    September 2018
    August 2018
    June 2018
    May 2018
    April 2018
    February 2018
    January 2018
    November 2017
    October 2017
    August 2017
    July 2017
    June 2017
    May 2017
    April 2017
    March 2017
    February 2017
    January 2017
    December 2016
    October 2016
    September 2016
    July 2016

    Categories

    All

Rare Revolution is published by NRG Collective, a not-for-profit media company specialising in rare disease content
Contact Us
Editor:  
   editor@rarerevolutionmagazine.com
​Advertising: rstewart@rarerevolutionmagazine.com

  • Home
  • Rare Revolutionaries
    • Our Charity Partners
    • Revolutionaries Community
    • Join the Rare Revolution - Charities sign-up
    • Our Corporate Friends
  • Blog
  • Back Issues
  • #RareYouthProject
    • RYP Blog
  • The People of RARE
    • CEO Series
    • PEO Series
  • APP & Downloads
  • Media