What ‘Rare’ Means to Me This Rare Disease Day

What ‘Rare’ Means to Me This Rare Disease Day
3
(4)

A few days ago, a friend working in healthcare communications asked:

“What does rare mean for you?”

It got me thinking.

I answered: “Rare is something special, something unique. Something that doesn’t exist very often. But also, it’s something you should not forget about, something you shouldn’t oversee. Are we not all rare in a certain kind of way? We are alone, but together we are strong.”

Rare diseases

February is Rare Disease Month. What is a rare disease?

Orphanet defines it as, “Rare diseases are diseases which affect a small number of people compared to the general population and specific issues are raised in relation to their rarity. In Europe, a disease is considered to be rare when it affects 1 person per 2000. […] There are thousands of rare diseases. To date, six to seven thousand rare diseases have been discovered and new diseases are regularly described in medical literature.”

I am rare

I was born with epidermolysis bullosa (EB), which is a rare disease. When living with a rare disease you are confronted by many obstacles, not only the condition itself. But because it is rare, it’s harder to get treatment, support, and financial help because we get fewer resources than other conditions.

Fortunately, there are many great people out there who don’t want to accept that no one has the answers they need, people who help make life easier for people living with a rare disease. They take the matter in their own hands and start finding the answers themselves by funding treatment research and working hard to obtain the financial and psychological help needed by patients and caregivers.

Rare Disease Day

On Feb. 28 we celebrate Rare Disease Day. During this time many patient organizations around the world get together, work together, speak together — they amplify the voices of people living with rare diseases.

I also work with a patient organization, DEBRA Austria, and with an umbrella organization for rare diseases, Pro Rare Austria. I am blessed to know and meet a lot of strong, interesting, inspiring people working hard to bring the needs of people with rare diseases to the table.

Living with a rare disease can often make you feel alone and forgotten, but there’s a lot of hope and strength to be found in realizing what the medical community is achieving. You are not the only one with special needs and uncertainty; many more people out there are searching for similar things, needing similar things. Joining in our shared push for better care will make you feel stronger, like you are part of something big — like, suddenly, you’re not so “rare” anymore.

Rare is beautiful

To me, “rare” isn’t something bad, something I don’t want to be. I am treating it as something special, something to be proud of. We all should. Yes, I am rare, but I am not alone. We are not alone.

Rare is many, rare is strong, rare is proud.

Thank you to all those amazing people working hard to give us strength, to connect the rare communities, and to make life with a rare disease easier for us. Together we can achieve more.

***

Note: Epidermolysis Bullosa Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.

Lena is an Austrian born with the rare, genetic skin condition epidermolysis bullosa. She works with DEBRA Austria, an organization that supports “butterfly children,” and with another NGO which functions as an umbrella organization for rare diseases in Austria. She loves to be with family and friends, travel, sing, do sports, eat brunch, read, and spend time in solitude — especially if near the sea.
×
Lena is an Austrian born with the rare, genetic skin condition epidermolysis bullosa. She works with DEBRA Austria, an organization that supports “butterfly children,” and with another NGO which functions as an umbrella organization for rare diseases in Austria. She loves to be with family and friends, travel, sing, do sports, eat brunch, read, and spend time in solitude — especially if near the sea.
Latest Posts
  • EB community, Rare Disease Day, 2020, love
  • EB community, Rare Disease Day, 2020, love
  • EB community, Rare Disease Day, 2020, love
  • EB community, Rare Disease Day, 2020, love

How useful was this post?

Click on a star to rate it!

Average rating 3 / 5. Vote count: 4

No votes so far! Be the first to rate this post.

As you found this post useful...

Follow us on social media!

We are sorry that this post was not useful for you!

Let us improve this post!

Tell us how we can improve this post?

Leave a Comment

Your email address will not be published. Required fields are marked *