Tuesday, 1 October 2013

Albinism Etiquette

It can be awkward when you meet someone with a 'difference' and you don't quite what to say when referring to their condition.  Below is a list of what to say and what not to say in regard to albinism.  

Do Not Say
Do Say
Person with albinism
Suffers from or is a victim of albinism
Has albinism
An albino person
A person/baby/child who has albinism
Vision impaired
Vision impairment, genetic condition

Today's post written by Annette Ferguson.  

Saturday, 16 February 2013


Welcome to the beginning of 2013!!

We would like to dedicate our first post in 2013 to Dr Brian Evans, a 'friend to all' in the albinism community, who sadly passed away suddenly and unexpectedly while undergoing chemotherapy treatment for leukaemia. His Daughter said on facebook that this was "A battle he faced with optimism and dignity (despite the indignity of the disease)".

Dr Brian Evans
17 December 1943 - 3 February 2013

"For those who didn’t know Brian, he was a PWA (person with albinism) himself and great contributor to the Albinism community worldwide.  He presented very helpful information at various conferences and get togethers in the US, UK and Australia.  He had a great way of explaining how and what we see and why.  He also prescribed lenses for many PWA who had struggled with optom prescriptions from less knowledgeable practitioners. Brian (also known as Crusty) was a very cheeky and witty man, he was provocative and opinionated at times, but it was always with a smile and a generous heart that he contributed to his community.  One of my favourite things about Brian was that he liked to take people out of their comfort zones.  He always saw the funny side of things and was always honest in his opinions, two great qualities.  R.I.P. Brian Evans, I for one will miss your provocative and political banter, you always made me laugh." Annette Ferguson
IEEE Press 

Understanding Science & Technology

Paperback, 256 Pages, Published 1996
Brian was a telecommunications engineer for more than 30 years and he received a PhD in medical physics from Barts.  He saw direct comparisons between his technical work with digital TV and vision in albinism.

Digital TV and the Eye
(click on images below to enlarge for reading)

Brian decided to re-invent himself and studied Optometry at Manchester University as a mature age student, which he termed his "retirement hobby".  He was active and out there and his age was no barrier.  Brian graduated from his Optometry degree in 2012 aged in his late 60's.  
Brian created some fantastic, original resources for the albinism community.  'Written for the novice' his style made complex topics easy to understand.  He freely shared his teaching slides:

Brian Evans "Good light goes through the pupil but in the albino eye, bad light goes through the iris. On a sunny day everything gets washed out.  Any strong light will have the same effect as sunlight. I don't like supermarkets either if the fluro strip lights are unsheilded."

During his presentations Brian explained his personal journey with albinism: 
Photo of Dr Brian Evans
as a child, which he included in his presentation.
"The albino experience: I am 64 years of age and I have oculocutaneous albinism, my corrected eyesight is about 20 60.  I have spent most of my working life in scientific research.  My retirement hobby is gaining better understanding of my condition and communicating that information to people with albinism (and their families) and to eye care professionals.  When I was a baby my Mother took me to see an Eye Doc. He said that I had albinism and would be blind by the time I was 5 years old.  My Mum took me to another Eye Doc who said that I was not albino and my eyesight would improve.  I re-discovered that I had albinism when I was 58.  As an Engineer, I also talk about 'fixing' things, rather than 'managing the condition'."

"I hope that I have shown that the albino retina may not be as bad as first feared and that improvements in vision can be made." Dr Brian Evans

All information in this blog post is from publicly accessible sources.  

Today's blog was written by Helene Johanson.  

Wednesday, 14 November 2012

Tonga Hosts 1st Albinism Support Meeting

Tongans looking resplendent in UV SPF50+ clothing
from SunProtection Australia, Stingray and local donators!
Ms Belinda Jordan is our representative in Tonga, she is an Australian citizen working abroad.  She first contacted PAP in August 2012 and ever since we have been endeavouring to support her by providing information about albinism and encouraging her in her quest to find out information about the current situation in Tonga, as well as the possibility of setting up a local albinism support network. 

Belinda organised the 1st Albinism Support and Information Meeting in Tonga on Saturday the 10th of Nov, 2012.  It was a great success with 17 people attending, including 9 people with albinism (aged from 3yrs to 35yrs)!  There are of course a lot more people with albinism in Tonga but this a very promising beginning for which we congratulate them!
Sun protection handouts from
Cancer Council Queensland

PAP & locally sourced Donations laid
out for people to freely access.

This first meeting was advertised on the radio and they gave out the donations which PAP had sent them from Australia (via our helpful volunteer courier from Narbethong), as well as some local donations which Belinda personally organised from her family and friends.  Those who attended were not expecting to receive anything and they were surprised and grateful.
Ms Belinda Jordan
hands out the donations!

Belinda reported that "People were  pretty quiet at first but got more confident to chat and shared some stories. There was a general unawareness amongst everyone about sun damage, skin cancer etc. and also about vision in regards to aides and even wearing sunglasses to help reduce the glare.  Some of the parents and family members had previously felt bad about not knowing how to help their children/siblings.  It was also sad to hear one Mum tell how her Daughter is often called 'stupid' by the teachers due to misunderstanding of her vision impairment". Education and information sharing are primary goals of PAP and it is great to see these Tongans now have such tools to enable them to self help and improve the situation for their own families!
The future looks bright!
Trying out the donated monoscopes :)

All attendees were interested and found it eye opening to see the information which PAP coordinator Annette Ferguson provided about vision impairment associated with albinism.
Trialling the Eschenbach Magnifier
Everyone was quite facinated by the Eschenbach magnifying glass donated by 'Quantum Reading Learning Vision', as none of them had ever used one and found it very helpful.  This was finally given to Moala, a school teacher who has to do a lot of reading/ writing for her job and who has not had any prior assistance with her vision impairment.
Having fun reading with the magnifier!

In the closing prayer, Moala gave thanks and said "how important it was to help the younger kids as she and her family did not know what to do to help her as a child  but now we have a chance to help the next generations". 

Gorgeous kids enjoying sun
safe play on the day!
Belinda plans for everyone in the group to have a decent supply of sunscreen before she returns to Australia in the near future.  Both Belinda and PAP are very keen to see this group continue and flourish and to share their news and progress.  

Little Winner - A perfect model for
how to have fun in the sun:
Long sleeves & pants, sunnies,
hat & most important 'Attitude'
to carry off the look in style :)
They are planning to have another meeting on Saturday the 1st of December to discuss how to move forward in creating their own formal support organisation.  

Please share news of this upcoming event to ensure your family and friends in Tonga are able to attend to show their support for this fantastic endeavour!

We hope you enjoy the great photos from the event and feel inspired to become involved in the future!

Todays blog written by: Helene Johanson and Belinda Jordan.

Photographs supplied by Belinda Jordan & Mele Tafa.

Thursday, 11 October 2012

PAP Pacific Outreach

 PAP Pacific Outreach

Information Pamphlets
included in Packs
Donation Packs: PAP have been lucky to receive  donations from some wonderful Australian companies and organisations for us to distribute to Pacific Islanders with albinism.
Donated Sunprotection
and Skincare products
included in packs!
We are using those donations to
help start local albinism support groups in Samoa, Tonga and Tuvalu as a first step. 
Our packs feature several items which are useful to people with albinism and which are achieving two goals of introducing them to products and also providing practical introductory education about skin care and sun protection.
An example pack showing UV protective
clothing and Eschenbach magnifier.

UV 50+ Sunprotective clothing (Hat, Workshirt & hoodie) from SunProtection Australia.
Selection of UV SPF50+ Clothing
from SunProtection Australia
and Stingray; also
featuring monoscope.
* Each pack contains:
- UV 50+ sunprotective clothing from SunProtection Australia and Stingray® Australia.
- Monoscope [1 pack contains a small Eschenbach magnifier donated by Quantum Reading Learning Vision].
Skin care and sunprotection product samples donated by Priceline Dubbo, Hamilton Laboratories, Comvita and Concept Laboratories.
- Information pamphlets about sunprotection and skin care by the Cancer Council.
- 75mL SPF30+ sunscreen and lipbalm purchased from Coles and Woolworths Supermarkets from the funds raised for the Pacific Albinism Project.

Adapt-a-Cap UV SPF45+
from SunProtection Australia

We are extremely grateful to our volunteer couriers, the Leausa family and Ms Vicki Drake who privately transported the donated goods on our behalf to Samoa and Tonga, respectively.
Yvette and Helene pack
donated items for Samoa
PAP recently visited Samoa for the first few weeks of June 2012.  Prior to our visit the PAP Coordinators informed the Samoan Ministry of Health CEO, Dr Palanitina Tupuimatagi Toelupe of our upcoming visit.  We also connected with Ms Louise Main of the Samoan Rotary Organisation and she introduced us to Christine Hurley of the Samoan Cancer Society  
Putting together donation packs
 for Samoa
The Leausa family promoted PAP during their visit by speaking to many people living in the local community. 
They were invited to visit people with albinism and their families in their homes and distributed packs of donations to several people.

Katrina at the Marketplace in Samoa
where she helps her family, as she no longer attends school.
She is allowing her photograph to be published
to promote awareness of albinism in Samoa
 and to seek asssistance for their health and education needs.
 They confirmed the situation in Samoa is the same as that previously found in Tuvalu during Helene's research.  That in general people knew very little about albinism and that there was little assistance available for their vision impairment.

This has led to a situation whereby people with albinism tend to not attend school until completion, as they find it too difficult to see the board and complete their school work. 

This in turn leads to people working in unskilled labour jobs, often outside and without adequate sunprotection.

This confirms our previous finding that "In general, lack of education about albinism and the lack of access to sunprotective health care, plus adaptive technology for the vision impaired tend to result in poor skin health of those individuals with albinism living in the Pacific Islands".
The Leausa family spoke to people about sun protection, using sunscreen and wearing sunsmart clothing and found that people were very grateful for the information, as they were not aware.  One family were even more grateful for the packs of donated goods that were given to them for their children.

The Leausa family were told that people in Samoa definitely need assistance and welcome any help to care and provide for the special needs of their beloved family members who have albinism.  People expressed a desire to see albinism support in their local community.

Weeks after our PAP representatives returned to Australia, we heard a local albinism support group had formed 'The Clarence Sebastian Foundation'.  Find them on facebook!

Their group were originally formed to assist one particular family in Samoa.  We have had preliminary conversations with their representative Reverend Siaosi Salesulu, as well as Christine of the Samoan Cancer Society.  The Samoan Cancer Society put forward a preliminary suggestion that they could work together since sun damage and skin cancer are a major concern for people with albinism.  We  suggested a broadening of the albinism groups approach, to assist other people with albinism in the wider Samoan community.

PAP is very pleased to see the formation of this local albinism support group in Samoa.  This is exactly what we were hoping to encourage in Samoa and other Pacific Nations.  We hope to continue our relationship with the Clarence Sebastian Foundation and to assist them further with the sharing of relevant information about albinism and help them to connect to other similar groups in the region as they form.

Packing donations for Tonga,
Command Central
A.K.A. Helene's House :)
Ms Belinda Jordan works in Tonga with the 'Mango Tree Centre' an NGO.  She has been working with us for a few months now, to promote PAP in Tonga.  We have supported Belinda and shared information resources and ideas with her.  Belinda previously worked with the Tongan Education Department and since first contacting us, she has been able to promote albinism support by presenting information about albinism to local school principals and other fellow workers.

Helene delivering the donation packs to Vicki,
who works with Narbethong State Special School and
who personally volunteered to transport them to Tonga for PAP.

Recently in the first week of October 2012, Narbethong State Special School travelled from Brisbane to Tonga to work with the Mango Tree Centre.  PAP were lucky to be able to send some donations (4 packs) to Tonga with them (via Vicki) to deliver to Belinda.
Example of a donation pack for one person
Belinda is now busy planning to hold an albinism meeting in order to distribute the donations to people in Tonga on our behalf.  She is also planning to try to form a local albinism support group.  PAP are working with Belinda to create information resources for Tonga and to support her in all her much appreciated local endevours.

We will be sending the remainder of our current lot of donation packs to Tuvalu in the near future.

We will hopefully be able to report back the progress with the formation of local albinism support groups and hopefully create a system for how we can all work together across the South Pacific Region.

PAP firmly believe that information sharing is the key to success for albinism support across the South Pacific Region.

Today's blog written by: Helene Johanson
Photographs by: Helene Johanson & Sipua Leausa.

Wednesday, 10 October 2012

How PAP Works

What is the Pacific Albinism Project? 

- Increasing awareness about albinism, distributing information and sharing our knowledge about albinism with Pacific Islanders.
-Help develop localised support for people with albinism in all the Pacific Islander Nations. 
- Develop an interactive support network for the entire South Pacific Region. 

- Managing the overall project keeping it on track and involving others, to work towards our outlined final aims and goals.

How do we do this?

- We work in a 'capacity building' manner (Definition). 

- We encourage the formation of local support networks for people with albinism. 

- Seek out local connections and share ideas and encourage people to form an albinism support group.

- Share information about albinism and help devise solutions based on our prior knowledge base from Helene Johanson's PhD research, as well as our Australian workshop and years of working with people with albinism in Australia. 

- We also share information about what is happening in other local albinism support groups across the Pacific.
- We actively create much needed information resources.  We also connect with respected educators, health experts and community leaders in Australia to discuss the health and educational requirements of people with albinism.

*  Sharing information and helpful guidance, always encouraging local support networks to prevail! 

We also build confidence by sharing other's similar work in other Pacific nations, to encourage people further and to show them that they are not alone.  We encourage those local groups to connect with each other and directly communicate. 

We are also willing to continue to work together with those new support groups in the future, to share information and potentially source Australian based assistance for their groups. 

We are willing to travel to Pacific Island Nations to present an albinism focussed workshop to their local support network and to share our knowledge and to propose practical solutions for their community.

Thursday, 20 September 2012

Albinism: why corrective lenses don't work.

Many people ask 'why don't glasses or corrective lenses help the vision impairment caused by albinism?'.  Basically, corrective lenses correct problems with the cornea (at the front of the eye).  The inability to produce melanin, which is a feature of the albinism condition, causes underdevelopment of the retina, the fovea and often the optic nerve which impairs the ability to see fine detail.  These problems cannot be corrected with lenses.  

Posted by Annette Ferguson. 

Monday, 16 July 2012

The Awesomeness of Albinism

These are a couple of posters that are doing the rounds on Facebook and Pinterest at present, designed by Annette Ferguson...