I thought it was just a rash but rare cancer now covers 90% of my skin splitting my hands and feet open

WHEN Tony Ferreira developed a small skin rash on his lower back – he assumed it would be gone in a few days.

And given the dad-of-one, 40, had always been fit and healthy, the last thing to cross his mind was that it could be cancer.

PA:Press Association
Tony has a rare form of non-Hodgkin lymphoma called Sezary syndrome[/caption]

However, Tony’s worst fears became a reality when the rash rapidly spread across his body – causing his feet and hands to split open.

Doctors soon diagnosed the gardener, from Jersey, with a rare form of non-Hodgkin lymphoma called Sezary syndrome – which has now affected about 90 per cent of his body.

Desperate to keep her husband alive, Tony’s wife Osvalda is now pleading for a stem cell donor to come forward and save his life.

She said: “We pray that a stranger will help us to continue our lives together for many years to come.”

We pray that a stranger will help us to continue our lives together for many years to come

Osvalda Ferreira

Tony’s nightmare first begun in 2012, when he noticed a small rash on his lower back which did not go away.

The rash quickly developed – causing his hands and feet would split open – and Tony then noticed lumps in his groin and under his arms.

Five years on, in 2017, medics diagnosed Tony, originally from Madeira, with a rare form of non-Hodgkin lymphoma called Sezary syndrome.

The condition causes white blood cells to become cancerous and aggressively attack the skin.

PA:Press Association
Tony’s wife Osvalda is pleading for a stem cell donor to come forward and save his life[/caption]
PA:Press Association
Tony’s illness causes his hands and feet tosplit open[/caption]

About 90 per cent of Tony’s body is now affected by the rare cancer, and his best chance of survival is blood stem cell donation.

His wife is now desperately hoping a stem cell donor will come forward.

The charity DKMS is co-ordinating the worldwide search for a donor, but Tony’s Portuguese heritage is making it much more difficult for him to find a match.

Tony’s parents and four siblings have been checked as a potential match, but none are suitable.

In March, Tony’s doctors decided to treat him with a new anti-cancer chemotherapy drug (mogamulizumab) but the trial was then delayed due to the Covid-19 pandemic.

Delayed treatment

Osvalda, who worked as a housekeeper for a care home in Jersey, had been keeping the family afloat financially, but was then advised to take temporary leave due to the risk she might contract Covid-19 and pass it on to her husband.

She said: “Tony’s condition is bad enough, but for thousands of patients living with cancer in the UK, Covid-19 has delayed many treatments.

“We’re not sure yet when we can begin travelling to London for treatment or what the new normal will look like.

“I long to hold Tony’s hands again, without his protective gloves on.

PA:Press Association
About 90 per cent of Tony’s body is now affected by the rare cancer[/caption]

What is Sezary syndrome?

Sezary syndrome is an aggressive form of cutaneous T-cell lymphoma which is a group of disorders that occur when T-cells (a type of white blood cell) become cancerous and affect the skin.

It is characterised by a widespread red rash that may cover most of the body, the presence of cancerous T cells (called Sezary cells) in the blood, and abnormally enlarged lymph nodes.

Although Sezary syndrome can affect people of all ages, it is most commonly diagnosed in adults over age 60.

The signs and symptoms of this condition can vary but may include:

A red, itchy rash that covers large portions of the bodyEnlarged lymph nodesAlopecia (hair loss)Thickened skin on the palms of the hands and soles of the feetAbnormalities of the fingernails and toenailsHepatosplenomegaly (enlarged liver and spleen)

Affected people may also have an increased risk of developing another lymphoma or other type of cancer.

The exact cause of Sezary syndrome is currently unknown.

Source: Rare Diseases

Treatment varies based on the signs and symptoms present in each person and the severity of the condition.

“Tony has been wearing his blue plastic gloves so long now that I’ve almost forgotten how his hands feel without them.

“He has such strong hands and holding them would reassure me that everything is going to be all right.”

Jonathan Pearce, chief executive officer at DKMS UK, said the charity had seen a 50 per cent drop in the number of people coming forward to be donors due to coronavirus.

He added: “We are hugely concerned about the impact Covid-19 is having on those who rely on a blood stem cell donor.

“While many stem cell transplants are still going ahead, the logistics around supporting blood stem cell donors to travel to hospital, and then arranging the transport of the stem cells to the transplant centre, have become much more challenging and complex.

“There are also transplants that have been delayed, but once the pandemic is over we know there will be a backlog of patients in urgent need of an unrelated blood stem cell donor.

“Sadly though, in some of those cases there’s a risk that the disease could progress further, and a transplant may no longer be possible once this is all over.”

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