A MUM who thought her daughter’s rash was an allergic reaction was shocked to learn she had a “Pac-Man” like disease that attacks the immune system.
Starr Downs, 23, noticed a rash on her daughter Esmae Smith’s hands and feet on April 6, but assumed it was a reaction to the .
Esmae Smith developed a rash on her hands and feet in April and her mum assumed it was an allergic reaction Credit: Kennedy News
But when she developed a high fever and found it difficult to walk up stairs, Esmae was sent to hospital where her condition declined Credit: Kennedy News
She took Esmae to the pharmacy and was prescribed some anti-itch cream while she was waiting to get a doctor’s appointment.
But her temperature kept spiking to 40 degrees and as the days went by, she was struggling to walk up the stairs, so Esmae was sent to hospital where her condition “went downhill really quickly”, the mum said.
Esmae was eventually transferred to Great Ormond Street Hospital on April 16 and it was there she received the life-changing diagnosis of Macrophage Activation Syndrome (MAS).
Doctors explained the disease to Starr by comparing Esmae’s white blood cells to the iconic computer game Pac-Man, in which the character ‘gobbles’ up cells for points.
She was eventually transferred to Great Ormond Street and there she was given the shocking diagnosis Credit: Kennedy News and Media
Doctors told Esmae’s mum Starr that her daughter had a condition called MAS Credit: Kennedy News
But in this case, they said the cells aren’t just targeting infections, they are “attacking her immune system” and “eating everything they see”, in a way likened to the eighties hit video game.
Speaking about receiving the diagnosis, the stay-at-home mum said: “I just broke down and started crying, I couldn’t because I didn’t realise how severe the problem was.”
MAS is a rare condition and is described as a massive inflammatory response that takes over the whole body.
What triggers the body’s overactive immune system in MAS is unclear but is thought to be a reaction to infection in about half of cases, the Arthritis Foundation says.
Symptoms include a high, constant fever, changes in alertness, easy bruising and an enlarged liver.
Treatment for MAS involves trying to reduce body-wide inflammation as quickly as possible to prevent organ damage and if the condition continues, chemotherapy can be used.
Explaining what happened to her daughter, Starr said: “It started with a rash on her hands and her feet and she was sore around her mouth and one of her eyes was bloodshot.
“I thought just an allergic reaction, I just thought like a rash, I don’t know where she would’ve got it from.
“I took her to the pharmacy and they said it looked like hives and they gave us some itch cream relief until we could get a doctor’s appointment.”
Esmae’s condition, however, sadly continued to decline.
Starr continued: “She couldn’t really walk, she was limping. We went to the doctors and there’s stairs and every step we went up to get to the doctors she just moaned that it hurt.
“We stayed in hospital for eight days and they kept saying to us they’re not sure what it is.
Pictured with her mum Starr, Esmae’s condition means that her cells are attacking her immune system Credit: Kennedy News
Esmae is sadly still in hospital and doctors are unsure when she will be able to go home Credit: Kennedy News
“We [were transferred] to Great Ormond Street and then two days later is when the rash came really bad.”
She added: “They said to us it’s life threatening and that she was going downhill really quickly and children don’t normally deteriorate that bad.
“I was so scared, she wasn’t responding, she was just laying there just staring into space.”
Esmae then received her MAS diagnosis and doctors explained to the mum that it was a Pac-Man-like disease.
Speaking about her daughter’s blood cells, Starr said: “They’re not just attacking the infection, they’re attacking her immune system so her liver is damaged and her spleen is swollen.”
The mum said doctors are unsure what made her daughter so unwell but they currently believe the MAS was triggered by Systemic Juvenile Idiopathic Arthritis (sJIA).
This is a type of arthritis that not only affects the joints, but also other parts of the body like the liver, lungs and heart.
Starr has now set up a GoFundMe to fund travel costs and to give Esmae a ‘big treat’ once she is feeling better as she is now undergoing gruelling chemotherapy treatment.
Esmae’s mum initially thought the rash on her body was an allergic reaction Credit: Kennedy News and Media What is Macrophage Activation Syndrome (MAS)?
Macrophage Activation Syndrome (MAS) is a “massive inflammatory response that overwhelms the whole body,” according to the Arthritis Foundation.
It is an uncommon but potentially life-threatening complication of systemic juvenile idiopathic arthritis (SJIA).
Although it can occur with lupus and other rheumatic diseases, MAS mainly affects kids with SJIA.
Symptoms include a high, constant fever, changes in alertness, easy bruising and an enlarged liver.
Treatment for MAS involves trying to reduce body-wide inflammation as quickly as possible to prevent organ damage and if the condition continues, chemotherapy can be used.
So, what’s the outlook for the condition?
Today, MAS is diagnosed sooner than in the past, and kids are more likely to receive appropriate treatment.
The result is that many recover and have less organ damage.
Still, MAS is a life-threatening condition that can come back, even when effectively treated.
Although it’s unusual for a child to have it more than once, families should always be alert for MAS symptoms.
Source: The Arthritis Foundation
Esmae’s mum continued: “I just broke down and started crying, I couldn’t sleep because I didn’t realise how severe the problem was.
“[It’s] really scary because I’m so young and she is my only baby and I know age doesn’t matter but I do feel worse because I’m young.
“She was never poorly she was generally just a fit and healthy child, doing normal kid stuff and then all of a sudden everything just went downhill.”
She added: “We had no choice but to start the chemo drugs because she’s deteriorating really badly and it is life threatening.
“It did bring her back round.”
Doctors are unsure when Esmae will be able to go home but when she does, her mum will have to give her immune suppressant injections once daily.
Starr said: “It’s really scary because if she is to get an infection in the future, will her body be able to fight it.
“I know we’re in the safest of hands and obviously she has come a long way.
“I just believe that Esmae deserves a big treat after.”
Eze Chidiebere Paul
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