Blog

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

Rare Beauty - Sabah

Sabah is a laid back happy teenager who never complains despite everything she has been through.  I have had the pleasure of meeting her on a number of occasions and each time her strength, courage and positivity has truly inspired me.  To date Sabah has experienced more than most people will go through in their life times and yet she is the first to offer support and help to others. 

When Sabah was one year old she was diagnosed with cancer in her kidneys which resulted in their removal and a need for regular dialysis.  She was then diagnosed with lung cancer and required chemotherapy followed by radiotherapy as well as the removal of half a lung.  Three years later Sabah received a new kidney which changed her life, however, these failed several years later and she is now on dialysis four times a week.  This has a huge impact on her day to day life and that of her family. 

"I was put on dialysis full time when my transplant failed.  It was more upsetting that scary because I had lost someone close who had dialysis.  Every time I went in there I just remembered seeing her playing.  She was the most amazing little girl that you would meet.  Losing her was a massive thing because I had never lost anyone close to me before.  When I went in there I got very upset and it took me a while to get over that.  I have had to be strong and go and do dialysis.  It has started to get easier because I knew a lot of the nurses from before and I knew most of the kids and we just formed a bond so everything became easier and less scary.  Having a supportive team around you is so important.

It really helps a lot to have people who know how I feel.  You don’t feel left out.  You know that someone can actually understand you instead of a person just saying ‘yes I get it’.  Quite often people will say that they understand but unless they have been through it how can they. 

I was the first person from my group to leave and have dialysis at home without going to the big hospital.  At home I can speak to my mum and family but there is not the same feeling.  Every Thursday at dialysis we would have a quiz or competition that the teenagers would do and also sitting next to your friend who was also having dialysis and talking are the things I miss most.  I do keep in touch with one of my friends from dialysis and so we use social media to chat and that has made it easier. 

My condition affects the family a lot.  We can’t go on holiday like my friends do because of my condition also sometimes when I am admitted to hospital the rest of the family feel a bit lost without me being there.  They don’t know what to do with themselves because we are one unit.  Sometimes they want to help but don’t know how.  We have to plan everything in a certain way and have to take my dialysis into consideration whereas if we were a normal family we could do things when we wanted to. 

The worst thing about my condition is the food!  I have to keep an eye on what I am allowed to eat because I have to keep potassium low so that means no fries, no potato or tomato based food.  I am also really restricted with how much fluid I can take each day too.

My social life is really affected by this condition too.  If my friends meet up I sometimes can’t go or if there is a school trip happening I have to let them know about my condition and they have to be very careful and you just can’t have the same sort of fun, especially with teachers hovering over you all the time. 

Other people treat me differently because of this condition, for example, my friend used to worry in case I ate something high in potassium and she was like my mothers helper.  I really don’t like it when people baby me.  There is caring and then there is babying! 
I am happy to tell people about my condition if they ask but I don’t promote the fact.  For example I sometimes have a nasal gastric tube but I can take it out when I want.  If people see that then they ask me about it and I usually tell them what it is for. 

There is hardly any awareness about rare diseases which is why projects like Rare Beauty are so important.”

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 Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

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)