Wales, United Kingdom
Iryna was diagnosed with SMA (Spinal muscular atrophy) when she was only six months old. Shortly after that, Iryna moved out from Ukraine with her mother in hope for a better healthcare prospective. She is now, together with her mom, sharing their endless experience of seeking life saving treatment in the United Kingdom.
Spinal muscular atrophy can be explained as genetic neuromuscular disease that causes muscles to become weak and waste away. People with SMA lose a specific type of nerve cell in the spinal cord that control muscle movement.
Iryna and her mother, Lyudmyla, together are engaged into looking for the needed treatment to have better and more independent life. They constantly encounter many difficulties that prevent Iryna from seeking essential healthcare. However, they are not thinking about giving up and are looking for more ways to get the treatment that Iryna needs. They also share ideas of how to make Wales, UK more accessible and inclusive.
Lyudmyla says: “Iryna was diagnosed with SMA when she was only six months, after that we’ve moved to Portugal from Ukraine.
However in Ukraine we could not get any treatment, we’ve been told that SMA is not curable and they did not know actually what to do. They just gave us diagnosis. We asked them if there is any possibility to do any more research into this specific condition. We made them aware that we would be able to cover expenses, but the one thing they advised, was leaving to Germany for treatment. They didn’t do any genetic tests, neither X-rays or any other checks that would help in further diagnosis.”
“When we were in Ukraine, somebody advised to go to the hospital in the city of Kharkiv for the more advanced medical care. We were told there that the diagnosis from the previous place is not completely correct. We paid for the advised tests but have never received the results. In Portugal we did most of the investigations on Iryna's condition.“
"We spoke at the conference in Newcastle, UK about further research into this condition, we asked about trials, treatments and more information. After checking Iryna’s previous health history unfortunately we were told that we won't be offered any treatment in this case"
In 2020 they spoke againto the specialists in Newcastle, Iryna said that she doesn't have anything against doing new tests to check whether she would be suitable for any new treatments that might be out there. Iryna says: “Basically my diagnosis changes as I grow up older. When you reach 20 years old and have SMA your condition is then named as ‘less severe’, but it doesn't mean the condition is improving. ”
Iryna can walk with support what puts her as a 'type 3' in the criteria but if she would stopped walking at all it its type 2. In 2020 they have added subtypes what again affects her suitability for treatment.
"Everybody with SMA is affected different way and have various level of progression. It’s so important to have proper treatment to at least stop this condition from progressing, because it’s not only affecting muscles itself but also organs. Muscles are getting weaker and everything else it’s basically a side effects of SMA."
"We are fighting for one kind of treatment that Iryna could get. There is a type of injection that would help but they are extremely expensive. UK Government accepted to fund it but they didn’t want to provide this treatment to Iryna and were giving excuses all the time.”
Wales doesn’t have the clinics which could provide this specific treatment so we would have to go to England to one out of 11 places where they treat adult patients. However, we found out again that Iryna is not eligible for a treatment, because her current condition was named as not the type that falls into the criteria. We've made another referral to check whether she is eligible, and when Iryna passed it, they found another reasons to delay the final decision. After a CT scan, Iryna was waiting another year. When they spoke with clinic again, the appointment was changed five times with the final appointment booked for beyond the two year validity of the original CT scan. "This treatment could literally save her life. Iryna needs to see doctor frequently and have proper treatment."
“Instead of finding a solution to do this treatment quicker, they are sending her to adapt her wheelchair to be more comfortable” “I feel like you are preparing my daughter for hospice and not to have an independent life”. Iryna’s mom says that she was very upset and feels she is going round in circles.
Lyudmyla says that “It would be even easier if we could get a straight forward information that the treatment can’t be provided so we would be able to look for any other options, perhaps abroad. The constant waiting, while being forced to expect a response for years are giving us a hope which might not be out there. "If it’s a choice between a life or death maybe it would be worth to move somewhere else to seek treatment, but we haven't receive a proper answer, yes or no.”
Iryna’s mother feels like delayed decision is not right and said that will ask for compensation for that. “I will not let it go, because Iryna suffers pain”. “There are three treatments for SMA but only one is suitable for Iryna. From the one hand there is some kind of help available but it looks like it’s mostly just on paper. Three years is a huge amount of time to at least stop Iryna’s condition from worsening”.
I've asked Iryna whether there is anything she wish people knew about SMA. “What I realised at the Students Union is that If there are two people in a wheelchair it does not mean that they are the same and they disabilities are alike. Abilities of every wheelchair user vary. We have to make sure that the places are accessible for everyone.” she says. Iryna’s mother says that sometimes people don’t really take into account that Iryna is the type of wheelchair user that needs permanent help.
"I wish people examining Iryna would know more about SMA. It just feels like simple empathy and thinking outside of box would help. We understand that the treatment that Iryna needs it’s expensive and there is loads of bureaucracy but what would help it’s looking at the patients with empathy and respect not only through the criteria and rubrics. Why is Iryna unable to have this lifesaving treatment is for me not understandable.
I feel that people who respect their doctor’s decision refusing the treatments that might help in their conditions are literally losing the chance to help themselves.It shouldn’t be the case that we have to appeal the decisions to have a chance of getting the treatment that we need." Lyudmyla says."I’m a full time carer for Iryna, but she needs two or maybe even three. There was a time when I collapsed. What happens if I will be unable to be with my daughter 24 hours per day?"
"When it comes to accessibility in Cardiff, UK we would definitely do something with accessibility on the buses. The ramp for the wheelchair are not always available. However, overall I would say that this particular city in Wales is an accessible city for wheelchair users.
Iryna says "It’s also hard sometimes to order a taxi that would be able to take on board a wheelchair user. During daytime it’s mostly okay, but ordering a taxi is quite a challenge especially when it comes to finding somebody who could actually take my wheelchair and me to the car. However I think that if you want something, you will find the way to do that. Maybe it won’t be an ideal solution but you will find the way to do so. I don’t accept any excuses For anything. I’m stubborn.’