Rare Disease Day 2014 – talking accessible services

Sometimes I feel like such a small fish – almost literally, with all of my scales! Ichthyosis affects an estimated 10-20 individuals per million, and there are at least 20 varieties of the condition (source).

It’s no wonder I need to explain my condition to so many people I encounter – doctors, nurses, employers, service providers, strangers…

Right now I am trying to work with airlines to explain my cream needs for my international flights. It’s so difficult when they’ve never heard of the condition and cannot fathom why I need to carry nine kilos of paraffin in stowaway luggage, even with a letter from my dermatologist. My experience with some airlines has been so disappointing so far – lengthy phone calls to international call centres (which featured a direct NO to carrying a small jar of cream onto the plane), no direct contact to special needs departments and lengthy forms to complete – it makes me anxious for the inflight service. I don’t feel listened to or understood.

Every week I encounter more people affected by Ichthyosis – it seems we’re not as alone as we sometimes feel. It’s amazing how the internet has connected us rare gems – and we see similarities in our difference.

Today, 28 February, is Rare Disease Day. Its purpose is to raise the awareness about rare diseases and the impacts they have on patients and their families.

From the Rare Disease Day Australia website

“February 28th 2014 marks the 7th annual World Rare Disease Day and the 5th year Australia has been involved in this initiative.

This year’s focus is on improving care for people living with a rare disease addresses problems associated with fighting diseases which affect only a few people in each country. Expertise is scarce and scattered requiring a re-assessment of current treatment options that would result in cross-border cooperation.

Individuals and their families affected by rare disease often feel isolated and lack guidance as to how to best treat or manage the condition.

There are more than 8000 known rare diseases affecting more than two million Australians of which up to 400 000 are children. Most of these diseases are genetic, chronic and debilitating. Reaching out across borders can help individuals find common solutions and help to remind them that they are not alone.

People who are affected by rare diseases should be entitled to have the same treatment, access and quality of care as any other patient. Rare Disease Australia seeks to push for a National Rare Disease Plan to prevent those inflicted “falling through the cracks” of the Australian healthcare system.”

Fortunately I’ve experienced fantastic care from my hospital team, though on occasion I need to explain my medical history to doctors, which does become tiring when I really am sick.

However, I do hope that Rare Disease Day is taken notice of by people in the service industry.

Attitudinal barriers like discrimination and a lack of understanding about rare diseases can make living an every day life difficult – it can be as burdensome as a lack of accessible and quality healthcare. Dealing with taxi companies, airlines, restaurants, support services, government organisations, insurance providers, employers…this list seems endless…is tiring.

There needs to be dedicated special needs departments in service organisations – with direct lines and email addresses. People who work in these special needs departments need to be knowledgable in disability and rare diseases. Forms should be simple – easy to fill out online by doctors and patients and send back to the organisation (none of this print, complete, scan, email to doctor, fax to organisation business). We shouldn’t have to keep proving that we have a rare disease if we use a service provider regularly. We need to be listened to, and know that the advice we provide about our own rare disease is taken seriously by service providers. After all, we are the ones who know our conditions best because we live with them.

Those of us with rare diseases should be listened to by service providers, and shouldn’t have to jump through hoops to do the things that so many take for granted. We should be entitled to accessible buildings and services. My airline experience is proving to be burdened with red tape – I’d hate to think about how difficult it’d be for people who are unable to advocate for themselves.

Get involved:

You can find out how to get involved in Rare Disease Day here.

Check out the Facebook page and share your story.

Tweet Rare Disease Day Australia.

Visit the American National Organisation of Rare Diseases. .

For more information about Ichthyosis, and to see some important research, visit the Foundation For Ichthyosis and Related Skin Types (FIRST) website.

Tell me about your experiences when trying to explain your rare disease to a service provider?