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GvHD of the eye: patient experiences and a potential new treatment

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In this blog, some of our patients talk about how post-transplant complications with their eyes, including graft vs host disease (GvHD), have impacted their daily lives and wellbeing.

It also looks at the Anthony Nolan Research Institute’s work developing new treatments, from cord blood to promote wound healing of the eye and relieve the effects of ocular (eye) GvHD.

One of the most prominent side effects our patients experience post-transplant is GvHD. The condition is caused by small differences between the patient’s own cells and the cells received from their donor. As a result, their new developing immune system sometimes harms other cells in their body because it sees them as ‘different’.

GvHD can affect many parts of the body including the skin, gut, liver and even the eyes. Patients with ocular (eye) GvHD often produce less tears which leads to dry and gritty eyes and causes great discomfort.

Three of our patients have been kind enough to share their experiences of these symptoms with us. Here are their stories:

Rachel’s story

In 2016, Rachel underwent a second stem cell transplant from a matched unrelated donor to treat her acute myeloid leukaemia (AML). Like many patients, she developed symptoms of GvHD on her skin and in her mouth a few months later, which fortunately could be controlled through steroid treatments.

A few months later, Rachel started to experience dry eyes that slowly got worse over time and caused her great discomfort, especially during warmer seasons. Her medical team referred her to both eye and GvHD specialists who suspected she had developed ocular GvHD, but they were unable to prescribe a treatment that would cure her condition. Instead, she was advised to use ‘over the counter’ eye-drops to hydrate her eyes which she has used ever since.  

Rachel has been able to return to her career as an engineer since her transplant, but she’s had to learn how to manage the discomfort caused by her dry eyes. She believes the inconvenience it causes affects her wellbeing.    

Stress plays into your recovery and something like this – eye problems – is just another thing to be anxious about. If someone could get some of their wellbeing back (from this research) it would be amazing.

Rachel

Jean’s story

After developing mantle cell lymphoma in 2008, Jean received a stem cell transplant. For the last five years, Jean has developed very dry eyes which are also sensitive to light. She struggles to watch TV for long periods and often needs to wear sunglasses to protect her eyes.

Despite being referred to Moorfield’s Eye Hospital, she has not had a formal diagnosis of ocular GvHD and the treatments she’s tried all focus on relieving her symptoms, rather than providing a long-term cure. Jean is currently using a combination of artificial tears and eye drops to keep her eyes moist but also uses steroid and serum blood-based drops when her symptoms get worse. She has even tried using a hot face mask to relax the muscles around her eyes.

I have had so many problems with GvHD. One of these is dry eyes. Sometimes my eyes get so bad, I have to sit watching the TV with my sunglasses on! Fortunately, you build up resilience and learn to get on with things.

Jean

Tracy’s story

Since having a stem cell transplant in 2010 to treat her AML, Tracy has struggled for many years with a variety of eye problems. Like Rachel and Jean, she developed dry eyes after her transplant but also experienced severe light sensitively, hay fever symptoms and deterioration of her vision.

Although she’s never had a formal diagnosis of eye GvHD, her medical team did refer her to specialists at Moorfield’s Eye Hospital where she was asked to trial gel-filled contact lenses to relieve her symptoms. Unfortunately, her eyes were so dry that these lenses left her in agony. She’s also tried a variety of different non-prescription treatments that were recommended by her medical team that have only been able to provide moderate relief.

Throughout her recovery, Tracy’s eye problems have had a big impact on her wellbeing and quality of life. She’s unable to go to the cinema anymore as her eyes are too sensitive to cope with quickly changing light levels and she is worried about how her vision could deteriorate further in the future. She has had to come to terms with the fact that there doesn’t appear to be any curative options available to her, but she welcomes any research that might help improve the wellbeing of patients like her.

Generally, I have recovered well from my transplant, but my eye problems are affecting my quality of life. I was devastated when I found out nothing more could be done (to cure my eye problems).

Tracy

Looking to the future

As well as researching how we can improve the matching process between patients and stem cell donors, Anthony Nolan is developing exciting new therapies which we hope will treat GvHD of the eye in the future.

These treatments aim to achieve this by harnessing the natural healing properties of cord blood plasma.

Our immunotherapy group, led by Dr Diana Hernandez, is working with researchers in the BST in Barcelona (Spain) to develop a new treatment for eye complaints and injuries. They are developing a new type of eye drop, based on extracts from cord blood plasma stored in our cord blood bank. These cord blood plasma extracts contain signals that encourage other cells to grow and regenerate, which means they promote wound healing. They also help to keep our immune system under control and so could possibly reduce the effects of eye GvHD.     

Although this work is still in early clinical stages, we have recently published a new research paper that highlights our improved understanding of the effects these extracts have on cells in the laboratory. Our researchers have also measured the levels of growth factors, and other signalling molecules, within these extracts to get a better understanding of the eventual doses needed to create the finalised treatment.

This promising initial research acts as a foundation to develop an eye drop treatment that is currently being tested in formal clinical trials in Spain. In years to come, it could alleviate the uncomfortable and often painful symptoms of eye GvHD and improve the wellbeing of patients like Rachel, Jean and Tracy.

  • If you or someone you know is experiencing GvHD and needs support, we’d recommend speaking to your healthcare team.
  • For additional advice, you’re also welcome to call our Patient Services team on 0303 303 0303 or email: patientinfo@anthonynolan.org to speak to a member of our team.
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Research
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Blood cancer Blood disorder Bone marrow transplant GvHD Healthcare professional Patient families Patient stories Side-effects