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Rare disease alters twin sisters’ lives forever

07 May 2024

Twin sisters, Ellie and Leyna Parkinson, had their lives changed forever in October 2022, when Leyna was unexpectedly diagnosed with a rare form of kidney disease called focal segmental glomerulosclerosis (FSGS). They later discovered this was caused by a mutation in a gene called inverted formin 2 (INF2), and that Ellie has the same condition. 

Now 24 years old, both sisters are struggling to come to terms with their diagnosis and what it means for their futures. Leyna says: “I thought I knew the direction my life was going to go, but now I just have no idea. You don’t expect it, I never thought I’d end up like this.” 

Twin sisters Ellie and Leyna having drinks together
Ellie and Leyna Parkinson

Doctors were shocked

Less than two years ago, Leyna moved to Glasgow to pursue a career as a quantity surveyor after finishing university and leaving her hometown of Doncaster. She says: “I was really enjoying it, then I ended up in hospital with my family miles and miles away.” 

Leyna had been experiencing migraines which prompted a visit to the GP. Tests showed her blood pressure was so high that she was at risk of having a stroke. A subsequent biopsy confirmed kidney disease, with Leyna’s kidney function at just 10%. 

This was a complete shock. Leyna says: “I was still going to the gym, going to work full-time and doing normal things without realising anything was wrong, other than getting a migraine every so often. Doctors were shocked that I’d not realised I was so ill.”   

Twin sisters aged about 2
Ellie and Leyna

All my freedom was taken away

By March 2023, Leyna’s kidney function had dropped to 2%, and she required immediate haemodialysis (HD), as well as a blood transfusion. Leyna learnt how to perform peritoneal dialysis (PD) at home, to avoid multiple trips to a dialysis ward each week, but found this treatment had massive ramifications on her quality of life.  

Leyna says: “I had all my freedom and was living away but then I had to move back to Doncaster. I have needed to take lots of time off work because it’s too unpredictable how I’ll feel each day. I might wake up and feel fine or I could be sick, have no appetite and feel groggy. 

“On social media you compare yourself to others. I see people out and on holiday, and I can’t do anything, I’m just stuck here. With the PD, I was doing it in the evening for nine hours overnight, so I couldn’t go out and stay somewhere or go on holiday. I don’t even have the energy a lot of the time. I feel like an entirely different person.” 

Bittersweet messages from friends

For Ellie, it has been distressing to watch her twin sister in pain, especially knowing that she is also living with kidney disease. She says: “We’ve always been best friends. It’s horrible seeing Leyna go through it all and scary thinking that will be me one day. Leyna was confident and outgoing, but now she’s very self-conscious of the PD catheter out of her tummy and the HD neckline. She has very low self-esteem. People don’t fully understand it. Friends tell us to ‘get well soon’ but there is no getting well, this is life now. 

“When Leyna became ill, I was thinking I could give Leyna a kidney, but with our gene we get this protein leak called proteinuria, and my urine had been frothy for a while, so I thought I must have it too. A genetic blood test confirmed I did, and the doctor told me I couldn’t donate. 

“I feel like a ticking time bomb until it affects me more. I’m just glad I caught it early so I can monitor it. My kidney function is at 66% but hopefully medication will help it drop more slowly than it would have done without treatment.” 

Canine comfort

Leyna sought help for her mental health but has found geographical differences in care have left her without support since moving back to Doncaster. She says: “In Glasgow they had a specialist renal psychologist who understood what I was going through. She is an expert in kidney failure and dialysis, so when she spoke to me, she could give me the right advice. There isn’t a renal psychologist in Doncaster and my GP told me I had to go to a charity to try and find counselling.” 

Family has kept Leyna going, including a new four-legged friend. She says: “When I moved back, I got myself a dog to have something to focus on and get me out of bed. He’s called Rolo and has been a really positive impact on my life.” 

Spending time together has been essential for both twins, as Ellie also struggles with concerns about her future. She says: “I wanted to start trying for kids, but I don’t want to risk putting my kids through this by passing my genes on. If I was pregnant, I couldn’t take a lot of my medications and my kidney function could suddenly drop. I live round the corner, so I walk Rolo with Leyna, and we go out for coffee. We like to cook food and watch telly on a Saturday night to keep busy.” 

Young lady walking with her little white dog
Leyna walking with Rolo

Transplant offers hope

Leyna resumed haemodialysis, after deciding that peritoneal dialysis was not the right fit for her lifestyle. Instead of dialysing at home every night, she visited a dialysis unit three times a week for up to four hours at a time. Leyna held onto the hope of receiving a kidney transplant to remove the need for dialysis, and in April 2024, she finally received one. 

Several family members had come forward to donate a kidney to Leyna, but sadly none were a match. Then, out of the blue, a colleague of Ellie’s offered to donate his kidney after a chance conversation at work. Having gone through a successful transplant operation, Leyna is now starting life with her new kidney. 

Leyna says: “He was a complete stranger to me. It shows there are good people in the world, genuinely nice people who want to do something good. It’s really overwhelming. 

“I hope this transplant is the start of getting a bit of normality back. I’d like to go abroad, have more holidays, and enjoy my time. I want to make the most of life.” 

Young lady, aged 24 having dialysis in hospital
Leyna having haemodialysis

A cure is the ultimate goal

Although her transplant has removed the immediate restrictions of dialysis, it is not a cure, and a donated kidney lasts just 20 years on average. At 24 years old, Leyna knows it is unlikely this will be the only transplant she needs in her lifetime.  

Leyna says: “This transplant isn’t going to last me until I die, and I need to take immunosuppressants to reduce the risk of organ rejection. That could mean nasty side-effects and will put me at higher risk of skin cancer.” 

The prospect of improved treatments from research into kidney disease offers Leyna and Ellie the hope of a better future.  

Leyna says: “A cure would be the ultimate goal, but I just wish there was a better treatment for patients than dialysis. Something a lot more convenient, that doesn’t affect everyday life so much.  

I wish there wasn’t such a long waiting list for transplants and it’s sad some people can’t have one at all.” 

Mental health support 

Like Leyna and Ellie, it is perfectly normal to experience a wide range of emotions in response to being affected by kidney disease. It is not a sign of weakness if you are finding things hard and you are not alone. There are several sources of support available to you. 

It can sometimes help to talk with friends or family, but it can also be beneficial to reach out for additional support. Your renal healthcare team or GP can be a good first point of contact to access appropriate care. 

There are also other organisations you can contact directly to find support which is right for you: 

  • Kidney Care UK counselling and support service – free help and emotional support for kidney patients and their families. Call 01420 541 424 or email info@kidneycareuk.org  
  • National Kidney Federation free UK helpline – call 0800 169 09 36 (Monday to Friday, 9am-5pm) for specialist emotional and practical support for kidney patients. 
  • Mind: visit website or call infoline on 0300 123 3393 (Monday to Friday, 9am-6pm – excluding bank holidays) for mental health resources and guidance on where to get further support. 
  • Samaritans free helpline – call 116 123 for mental health crisis support (24 hours a day, 365 days a year). 

Your mental health is just as important as your physical health, so please make the most of the support available. 

Read more about people living with kidney disease

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