Our Community Blog Kaitlyn & Lisa’s story December 2020 Please note that this blog post contains distressing images of a medical condition. You can read more about Kaitlyn's fundraiser and sponsor her here. Kaitlyn Carter My mum, Lisa Carter, was only 51 when she died on 11th July 2020 of complications relating to a condition called folliculotropic mycosis fungoides, a rare type of T-cell lymphoma. For as long as I can remember mum suffered with skin problems until in 2018, she started to see dermatology consultants who believed her condition was likely either eczema or psoriasis. Lisa and Kaitlyn Carter, 2018 2018 Initially, mum’s skin was manged with topical treatments and a period of PUVA phototherapy which seemed to work in the short-term. After a while the itchiness, irritation, raised red areas and dryness returned – only worse. A second phototherapy session didn’t help as before and left mum’s skin looking like she’d been severely sunburnt, suggesting that it wasn’t actually eczema or psoriasis at all. Frustratingly, after many skin biopsies we were still in the dark about mum’s diagnosis. She began a seemingly endless cycle of oral steroids, topical steroids and gallons of cream. Things became a lot worse when her skin started to release large amounts of moisture – although her skin was dry, her clothes and bedding would be soaked in a few hours. Despite this, she was very good at hiding just how uncomfortable she was, continuing to look as glamourous as ever, even carrying spare clothes to change into halfway through the day. At the same time, she began to lose her hair, another indicator that this wasn’t simply eczema or psoriasis. Lisa in better health 2019 In June 2019 we threw a big party for her 50th birthday. We almost cancelled it due to the toll her condition was taking on her, but she loved a good party, put on her brave face and looked incredible. Later, in September 2019 she cycled from London to Paris – despite here pain – raising £595 for the British Skin Foundation. She said herself, she knew more than anyone just how life consuming skin diseases can be and was determined to do her bit to help. Lisa and husband Danny Carter on the London to Paris charity cycle ride Just two months later she was signed off work, her biggest issue at that time being poor temperature regulation, no matter how warm the house was, she was always cold. The moisture release from her skin, combined with the dampness from the creams meant it was impossible for her to get warm. Lisa in December 2019 2020 I travelled home from university to help whenever I could. I knew things were bad when I got home one day to find her curled up on the sofa covered with blankets for warmth and towels to soak up the moisture. Our whole family were fed up with being in the dark, not knowing what was wrong with her. It was difficult to know which creams helped and which didn’t, due to the sheer amount she had at any one time. Eventually she was able to get a referral to the St. John’s Institute of Dermatology at Guy’s Hospital in London and it was here she finally got her diagnosis of folliculotropic mycosis fungoides. The ‘folliculotropic’ part is an even rarer variant of mycosis fungoides which is characterised by the moisture release. She was booked in the next day to start radiotherapy and offered accommodation a short walk from the hospital. April Unfortunately, after a couple of weeks she began to show possible COVID-19 symptoms and was advised to isolate, back home in Somerset. The test proved positive and on top of that, blood samples revealed she had sepsis, acquired through staphylococcus bacteria getting into her blood through the many lesions she had all over her body. She was admitted to Yeovil District Hospital and on April 13th with sepsis infection under control, she was allowed home on my birthday. It was the best birthday present I could ever receive. Less than a week later, mum, dad and I returned to London to continue with the radiotherapy treatment. This time we stayed together in a flat in a bid to improve mum’s mental health. Dad took her for radiotherapy in the daytime and I became her carer. I cleaned wounds as deep as half of my finger and as big as my palm, whilst creaming her from head to toe. During a two-day break from radiotherapy, back at the flat, mum began to get weaker and started to hallucinate. Looking back, we should have known something was wrong, but we just put it down to the radiotherapy. In actual fact, it was another septic infection that landed her in A&E. May Things seemed to be getting better after a couple of weeks before she took another bad turn. The septic infection was causing her brain to swell, leaving her delirious with slurred speech. By this point it was late May 2020 and I had last seen her in late April. She had deteriorated a lot in that month, but she was still mum, giving me a little wink and smile when dad made a joke. She got worse before she got better, ending up in an Intensive Care Unit at the beginning of June, put on a ventilator, dialysis and into an induced coma. Lisa's breasts and face in June 2020 June Amazingly, she fought this and recovered enough to be moved to a High Dependency Unit where she spent her birthday. Thankfully, Dad was able to see her on her birthday and we sent balloons up on a very long piece of string outside her hospital window for her to see! It was obviously trickier than normal due to the pandemic to even see her – let alone celebrate her birthday. Over the next few weeks mum concentrated on building her strength. Even sitting up in bed was an incredible achievement as she had lost most of her strength from being bed-bound. By the end of the month she could walk 60 meters and things were looking amazing. She was still fighting the septic infection with tablets, alongside other little infections but she was on the up and we planned to get her home. July On the 6th July we travelled to London and I was allowed into the hospital for the morning in full hazmat-style gear to be taught her skin treatment routine. I remember thinking ‘how on earth am I going to be able to do this?’ But of course, I knew I would for her. So, after an intense morning of teaching, I learned a 2-hour routine of skin care (to be done multiple times a day), and transport was organised to take her home to Somerset. The house was set up ready, including a hospital bed downstairs and various other equipment. The number of bags containing cream, dressings, and other medications we were sent home with was crazy, filling both the boot and backseats of the car. One of the most shocking things I had to prepare for her were the burn sheets that lay underneath her. They are a sort of mesh underlay to go on the bed that are usually used for burn victims. We had to cover them in a cream that felt thick and greasy like lard just to keep her back moisturised. That night, me and my nan did her skin care and my two brothers came over and we all just sat with her. It was very emotional but amazing to have her home. Sadly, the next day things took a turn and mum told me to call 999. I knew it must be serious as I knew how much she didn’t want to go back to hospital. The ambulance that came insisted on taking her back to London as Guy’s Hospital was the only place equipped to give her the skin care she needed. We didn’t hear much until 10th July when we were advised to travel down to London to be close to mum. Dad was allowed into the Intensive Care Unit to be by her side and we lost her early morning on 11th July. Another septic infection had hit hard and even with the induced coma and machine support it was too strong. The truth is, her skin was experiencing such a severe breakdown that infections were inevitable and if she had beaten this one, there would have been another a week later. It was a never-ending battle really, she was unable to finish radiotherapy as she was weak and unable to start oral medication for the skin, partly because she hadn’t finished the radiotherapy, but also because she couldn’t take them whilst being on medication for sepsis. Her skin was never going to repair or recover, and these infections were going to keep finding their way in. The Carter family, Mitchell, Lisa, Kaitlyn, Billy and father Danny Looking forward We now know that with earlier diagnosis, her skin could have been treated before it got so bad and things likely could have been very different. Mycosis fungoides is extremely rare and difficult to diagnose, but if mum had read about the condition years before, could that have changed things? Looking back, we can make a long list of ‘what if’s’, but it doesn’t change anything for mum now. All I know is that if her story can stop one other person from experiencing what she did then she would be behind that all the way. I’ll be taking part in the Virgin Money London Marathon in 2021 to try and raise as much money as possible for skin disease research, in memory of my mum, Lisa Carter. Kaitlyn Carter Visit Kaitlyn's Fundraising Page Kaitlyn has already raised £2,348 with a virtual relay marathon in 2020. Her friends and family kindly also donated £3,745 in memory of Lisa. In total Lisa, Kaitlyn and their family and friends have raised £6,688 for skin disease research. What is mycosis fungoides? Dr Fiona Child, the Consultant Dermatologist who treated Lisa Carter explains. Dr Fiona Child Mycosis fungoides is a rare type of T-cell lymphoma that involves the skin. It can occur at any age but is most frequently diagnosed after the age of 50 years. It often mimics other conditions such as eczema and psoriasis and therefore diagnosis can sometimes be delayed. It usually presents with dry, scaly patches of skin that may have irregular shapes. The patches may develop into thicker lesions, known as plaques, and sometimes nodules or tumours may occur, which can break down to form painful ulcers. In a small number of patients, the skin may become red all over. Although it is a lymphoma, in the majority of people it is an indolent disease, does not spread beyond the skin and is associated with a normal life span. However, in a minority of patients it can become more aggressive and ultimately spread beyond the skin. In those with very widespread disease, where the skin barrier is damaged, there may be an increased risk of significant and life-threatening infections. The aim of management is to improve symptoms and control the disease as there is currently no cure. Treatments can clear the rash, but it usually recurs. In the early stages, skin directed therapies are favoured and include topical steroid creams or ointments and phototherapy (ultraviolet light therapy). Low doses of radiotherapy may also be used for individual lesions and can be used to treat the whole skin surface (total skin electron beam therapy) in those with more widespread disease. If skin directed therapies fail to control the disease effectively, other treatments may be needed which can range from immunotherapy (drugs which encourage the body’s immune system to fight the lymphoma cells) to chemotherapy. There are also a number of targeted antibody therapies currently in development or being assessed in clinical trials. Many research groups from around the world are working together to understand the causes of mycosis fungoides and why it behaves more aggressively in some patients. The ongoing research will lead to more effective management strategies and improved outcomes for our patients. Donate to skin disease research Visit Kaitlyn's Fundraising Page By donating to skin disease research you are helping us to find treatments and cures for common conditions like eczema, acne and psoriasis, potential killers like melanoma skin cancer and rarer conditions like folliculotropic mycosis fungoides Thank you.