Blog

Through the Rare Project we introduce you to the people behind their rare conditions.

Rare Beauty - Daycare Ward

Nicky Lewis is a clinical support worker on medical day care.  This department looks after children who are just coming to the hospital for the day and are receiving medicines as opposed to having operations.  She explains how patients having rare diseases can impact on the team.

"In our department we see lots of different types of conditions.  We have a lot of children with crohn’s disease, children who come in with missing enzymes, where they need replacing with infusions and other rare metabolic and rare diseases where they are not forming or not growing properly. 

When a child comes to us with a rare disease it certainly makes it more challenging.  It is nice though to see them come in and get the help they need to lead as much of a normal life as they possibly can.

Rare disease can have a huge impact on families.  Sometimes they can feel like they have not got the right support because people do not understand the condition.  There can often be limited amounts of information around because of its rarity and families can feel isolated.

More awareness would be helpful because they would realise they are not the only ones out there.  It brings the families who are suffering, or knows someone who is suffering, it brings them together.  They have more of a support network.

Having a rare disease can affect the type of treatment.  Every child is different and some of them have different needs for treatment.  You don’t always know how the body is going to react so they have to see if it suits that child and if we need to change doses and put it up or down and try different things.  It does make it quite challenging for them. 

Project like Rare Beauty help raise awareness in communities and people don’t feel like they are on their own, battling and struggling feeling that no one really understands them and what they are going through.  Projects like this do raise awareness and bring it more into the public eye so people know more about it and have more understanding.

When people come in for treatment and they see others in the same situation it is helpful because they realise they are not the only ones and that other kids come in, have their treatment and go home the same as they do. 

When you are having a bad day you just remember all the children who come through the doors and all the positive stuff.  That one bad day is just one of hundreds and hundreds of days working here that are good, so it is just one bad day.  I remember all the good I do on here and laugh, smile, talk to the kids.  That is what you do when you are having a bad day.  You have to keep pushing forward."

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

You can read about a surgeon's perspective to rare disease by clicking here.

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)