Fragile as butterfly wings

My name is Ladislav, I am originally from Slovakia and have been living in England for several years.

I am fundraising for a friend who has been severely disabled since birth, his name is Kristián, he is 33 years old.

This is his story:

 

Hi! 

 I am Kristián, 33, from Slovakia and since birth I suffer from a rare medical condition, which is called Epidermolysis Bullosa (EB) or sometimes called “butterfly skin”.  1 in about 40 000 people suffers from EB. In my case, the disease took the most severe form – dystrophic. The disease is physical and very painful. It manifests itself by open wounds all over the body, some smaller and some larger and deep. I have blisters and scabs all over my body, I do not have nails, and my fingers and toes are enlarged and deformed.

There are many other health problems associated with this disease. I don't only have wounds on the outside but also on the inside. My diet is limited, as I can only eat mashed food because I have problems swallowing. I can't swallow large pieces of food or small pills. I regularly have blood tests done, because I lose blood (and thus hemoglobin) through my wounds, so I have to regularly undergo intravenous therapy. 

My eyes are also badly affected by EB. The dryness is very uncomfortable and I need to use few different eye drops to help it. 

There are a number of vitamins, syrups and various medications that I need to take each day. 

You can guess that my immune system is not great. I can't even use the ambulance to go for my regular check-ups due to the high risk of contracting an infection from other patients. It's almost like living a Covid-19 situation all my life.

I weight only 40 kg, I can barely walk on my own as I immediately run out of breath and my heart rate jumps up. I get tired easily and my legs hurt a lot. After a short walk I always get painful blisters which then take a long time to heal.



My mom takes care of me 24/7. She has been with me since I was born, as I can't do much on my own. She prepares food and drinks, cleans me, she treats my wounds and helps me with everything I can't do myself. Wound care is needed every day – basically, without her, I would be completely lost.

Since birth, I've been mostly at home, using my computer, chatting with my friends to stay in touch with the outside world. I play games, watch movies on the Internet, read articles about the space, nature and other fascinating things. I like to spend a lot of time with my little dog Linda (Yorkshire). This is the closest it gets to  'a normal life'. Everything else is more like a bad dream that I am struggling to wake up from.

As I did not attend any secondary school because of my disability, the pension I receive from the state is small – I have to buy vitamins, bandage material and pay extra for the drugs I need. 

Unfortunately, in my case the health insurance in Slovakia does not reimburse much of the costs of my medical needs. Also there is only about 50 cases of EB in Slovakia, hence a very minimal health support for patients with this terrible disease. 


How can I use your help?

Using the funds raised with your help I will be able to pay for the expensive medication, vitamins, bandages and other aids. One of my wishes is to get myself an electric wheelchair that would greatly help me with my mobility and also get me out of the house.

I would also benefit from exercise machines like a static bike and a treadmill for strengthening my muscles.

In the past, when we saved up some money, we went on a healing stay to Croatia for a week. I can't go to the sea (the salt would wreak havoc on my wounds) but I really enjoyed the air – it did me very well. My wounds were drier and my mental health got better too. Maybe using this fundraiser, I will be able to visit a place like this again.

Another item would greatly help is a dehumidifier. We have humid air and walls as we live in an 80-year-old house. Again, my lungs and skin really struggle with it.

And lastly I would like to get a printer to print my medical and educational materials. 

 

I am very grateful for any donation – big or small. I would like to thank you from the bottom of my heart for reading this far and showing your support!
I believe that there are people of good will in the world prepared to help a cause like mine.

Thank you also on behalf of Kristián for all the help.

Ladislav