Chase the signs

Mps Awareness DayMay 15th

Click below to learn how you can
help us to raise awareness

Chase the signs #ChaseTheSigns #MPSAwareness #MPSDay

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Chase the signs

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MAY IS MPS AWARENESS MONTH:

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MAY IS MPS AWARENESS MONTH

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WHAT IS MPS II?

MPS II (Hunter syndrome) is one of seven types of MPS disease, and is estimated to affect 1 in every 162,000 infants born. It is unique from the other types as it only affects boys (apart from in exceptionally rare cases). This is because Hunter syndrome is X-linked, meaning it is inherited differently than other MPS disorders. Simply put, this means that females can usually only be carriers of the gene affected by Hunter syndrome, whereas their male offspring can inherit and be affected by the disease.

If you have MPS II or are a caregiver for someone with MPS II, join our

Young boy with Hunter syndrome

Silas

Young boy with Hunter syndrome

Joseph

SIGNS AND
SYMPTOMS

Hunter syndrome, like all MPS diseases, can be very difficult to diagnose because it affects each person differently. The signs and symptoms can appear at different times and often overlap with common childhood complaints.

Look out for a rare combination of these common symptoms:

Purple Icon showing frequent ear infections

Frequent ear infections

Purple Icon showing persistent runny nose

Persistent runny nose

Purple Icon showing frequent colds

Frequent colds

Purple Icon showing recurrent watery diarrhea

Recurrent watery diarrhea

Purple Icon showing umbilical hernias

Umbilical hernias

In addition to common childhood complaint symptoms,
other early symptoms of MPS II to look out for include:

Purple Icon showing joint stiffness

Joint stiffness

Purple Icon showing inguinal hernias

Inguinal hernias

Purple Icon showing coarse facial features

Coarse facial features

Purple Icon showing enlarged abdomen

Enlarged abdomen

Purple Icon showing enlarged tongue and tonsils

Enlarged tongue and tonsils

By getting involved and raising awareness of MPS II this MPS Awareness Day, we can help patients and their families #ChaseTheSigns toward a diagnosis, and get access to the care and support systems that they deserve.

GET INVOLVED

Learn more about the key symptoms often seen in the early years of an MPS II patient’s journey by watching the video below.

Being aware of the signs and symptoms can help identify and diagnose patients with MPS II as early on as possible, saving valuable time on what can be a long and winding diagnosis journey. Similar to other forms of MPS, it is often a combination of common symptoms in rare clusters that can point doctors toward an MPS II diagnosis, so learning to look at individual symptoms in relation to one another is often the key to revealing their true cause.

PATIENT
STORIES

AIDEN AND AJ'S STORY, AS TOLD
BY THEIR MOM, TONI-ANN

The story featured here may not be typical of all people who have Hunter syndrome; symptoms can manifest differently depending on the severity of the disease.

BIRTH AND FIRST SYMPTOMS

top-quote Aiden had frequent ear infections, which we were told are typical for this age. He had his adenoids removed but he was still a happy baby, then 18 months later, I had AJ. He loved playing with his younger brother; they did everything together. bottom-quote

Aiden at age 1

Aiden, age 1

FIRST MENTION OF AN UNDERLYING DISEASE

Aiden and AJ

Aiden and AJ

top-quote At the age of 2, I noticed a delay in Aiden’s speech development. I mentioned it to his pediatrician and he was referred for an assessment. They confirmed that he needed occupational therapy, physiotherapy, and speech therapy. We figured he was a boy; he was being lazy, no big deal. After a year, his pediatrician suggested that we see a geneticist. bottom-quote

FINDING AN ANSWER

top-quote By this time, his brother, AJ was about 12 months old; Aiden was 3 years old. AJ came with us to the appointment because we didn’t have a babysitter.

As soon as we sat down, the geneticist started pointing out all the things that she noticed about Aiden; that the tips of his fingers were bent, the bridge of his nose was flat, and he was hairy. She then turned to my other son, the baby, AJ, and said that she could tell that he had the same symptoms.

She suspected MPS II… It was very difficult to hear. I told myself that she was wrong but, when we got home, I saw pictures of other boys with MPS II, and they were my boys. bottom-quote

Aiden and AJ

AJ and Aiden

LIVING WITH HUNTER SYNDROME

Aiden, AJ and their mom Toni-Ann

Aiden, Toni-Ann, and AJ

top-quote They love to play, they are very social. They have a special bond, and I think it’s because everything they go through, they go through together.

Our boys have taught us a lot. You know, they may not be able to speak much, but they’ve changed us as people for sure.

I see everything that they have to go through, day after day, and they do it all with a smile, a giggle, and a laugh. bottom-quote

Together we can help raise awareness of the symptoms of MPS diseases to help doctors and families such as Toni-Ann's to #ChaseTheSigns of MPS II.

SILAS'S STORY, AS TOLD BY HIS MOM, NATALIE

The story featured here may not be typical of all people who have Hunter syndrome; symptoms can manifest differently depending on the severity of the disease.

BIRTH AND FIRST SYMPTOMS

top-quote My husband and I felt like the luckiest people on earth when we held our little boy for the first time. However, around the age of 6 months, we noticed that the back of Silas’s head was becoming flatter and that he had difficulties holding his head up. He also didn’t like being laid down on his stomach. bottom-quote

Silas and his mother Natalie

Natalie and Silas

FIRST MENTION OF AN UNDERLYING DISEASE

Silas at 6 months old

Silas, 6 months

top-quote At the age of 1, Silas became ill with a severe cold, high temperature, and obstructive bronchitis. A doctor asked us if Silas’s head circumference had been checked because he thought his head was unusually large, which upset me. To me, our little boy was perfect and yes, he had a big head, but Silas was a big child. bottom-quote

FINDING AN ANSWER

top-quote When he was 2, our little boy had an MRI scan. I was sitting on the hospital bed with Silas on my lap reading through his favorite book when the door opened. I looked at the expressions of the two doctors and immediately knew that something was wrong.

The consultant told us that the MRI showed an abnormality that might be a symptom of a rare disease called mucopolysaccharidosis. I was completely paralyzed. I couldn’t even cry.

We had to wait a month for the blood test results to confirm that Silas had Hunter syndrome. It’s hard when you think your child is healthy and then you are told you’ve got a really, really sick child who could die. It was horrible. It is still horrible. bottom-quote

Silas at age 2

Silas, age 2

LIVING WITH HUNTER SYNDROME

Silas at age 6

Silas, age 6

top-quote While Silas has a lot of fun at kindergarten, the downside is that he is exposed to illnesses from the other children at school, and, of course, he always catches them. It was also hard to find a nursery and school that could take him, due to his learning difficulties. He’s almost like a baby as he doesn’t speak more than a few words.

There is also little interaction from him; we cannot play together in the same way that you can with healthy children. We have to ensure that all doors are locked, because he’ll just run out if they are open. We have to close every cupboard, because he might play with something sharp and injure himself or his friends. These are problems we face in our everyday life. bottom-quote

Together we can help raise awareness of the symptoms of MPS diseases to to help doctors and families such as Natalie's to #ChaseTheSigns of MPS II.

MPS Day 2017

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