Видео 38
Просмотров 49 961

A Hunter Syndrome Story | Read by Jason Madison

7:14

The Hunter Syndrome Journey - The World of Work

7:20

The Hunter Syndrome Journey - Fitting Your Home to Your Needs

6:15

The Hunter Syndrome Journey - Managing the Emotional Challenges

5:30

The Hunter Syndrome Journey - What to Expect after a Diagnosis - Medical Specialists

6:12

The Hunter Syndrome Journey - Dealing with a Diagnosis

6:12

Living with Hunter Syndrome | Jason's Story

Jason Madison, an influential figure in the MPS community, shares his personal journey with Hunter syndrome.
Filled with many touching stories, Jason recounts the highs and lows of living with a rare disorder-from coming to terms with his diagnosis and enduring periods of poor health, to discovering his family history and rocking out with his bandmates.
Jason now devotes a significant amount of his time to advocating for the MPS community, having learned to see his diagnosis as a tool to connect with others and make the world a better place.
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Our sincerest thanks to Jason for sharing his story with us, and for working so diligently with the MPS Society to advocate and raise awareness.
If you ...

Видео

A Hunter Syndrome Story | Read by Jason Madison

7:14

A Hunter Syndrome Story | Read by Jason Madison

Просмотров 3204 месяца назад

‘Victor Overcomes his Fear - A Hunter Syndrome Story’, read by Jason Madison. Best friends Victor and Jackson attend their medical appointments together each week, and enjoy chatting and playing games until the appointments are through. But when Victor finds out that he needs surgery for his ear, he is faced with a difficult dilemma: how will he overcome his fear? Filled with colorful artwork, ...

The Hunter Syndrome Journey - The World of Work

7:20

The Hunter Syndrome Journey - The World of Work

Просмотров 556 месяцев назад

In this video, we explore the challenges of navigating the world of work as an adult living with Hunter syndrome, and offer advice on overcoming potential obstacles. Topics covered include your rights and entitlements, an explanation of the Disability Equality Index, and guidance on communicating your needs to your employer and colleagues, as well as tips on successful remote working. Visit hun...

The Hunter Syndrome Journey - Fitting Your Home to Your Needs

6:15

The Hunter Syndrome Journey - Fitting Your Home to Your Needs

Просмотров 12311 месяцев назад

Hunter syndrome, also known as MPS II, is a rare genetic disease that mainly affects males. The symptoms are widespread and can impact many aspects of daily life, including mobility, eating, sleeping, and playing. In this video, we explore some of the ways that Hunter patients and their families can make changes to their home environments to help make daily life a little easier. Visit hunterpat...

The Hunter Syndrome Journey - Managing the Emotional Challenges

5:30

The Hunter Syndrome Journey - Managing the Emotional Challenges

Просмотров 101Год назад

Hunter syndrome, also known as MPS II, is a rare genetic disease that mainly affects males. In this video, we explore an important part of the Hunter syndrome journey - the emotional and psychological aspects of living with Hunter syndrome. Visit hunterpatients.com today to learn more and help those on this journey. Talk to your doctor if you are concerned about symptoms, or have any other ques...

The Hunter Syndrome Journey - What to Expect after a Diagnosis - Medical Specialists

6:12

The Hunter Syndrome Journey - What to Expect after a Diagnosis - Medical Specialists

Просмотров 163Год назад

Hunter syndrome, also known as MPS II, is a rare genetic disease that mainly affects males. Hunter syndrome can affect many different parts of the body, and as a result can require complex physical management. In this video, we explore some of the different medical specialists who may be involved in managing this rare condition. Visit hunterpatients.com today to learn more and help those on thi...

The Hunter Syndrome Journey - Dealing with a Diagnosis

6:12

The Hunter Syndrome Journey - Dealing with a Diagnosis

Просмотров 716Год назад

Hunter syndrome, also known as MPS II, is a rare genetic disease that mainly affects males. In this video, we explore what happens after a patient is diagnosed with Hunter syndrome, the range of emotional responses that parents and caregivers may experience, and the support available to them. Visit hunterpatients.com today to learn more and help those on this journey. Talk to your doctor if you...

The Hunter Syndrome Journey - Pathway to Diagnosis

8:24

The Hunter Syndrome Journey - Pathway to Diagnosis

Просмотров 768Год назад

Hunter syndrome, also known as MPS II, is a rare genetic disease that mainly affects males. In this video, we explore the various twists and turns, obstacles, clues, and eventual answers, faced by families treading the pathway to diagnosis. Visit hunterpatients.com today to learn more and help those on this journey. Talk to your doctor if you are concerned about symptoms, or have any other ques...

MPS Day: A Conversation with the Experts

6:20

MPS Day: A Conversation with the Experts

Просмотров 338Год назад

Join us in raising #MPSAWARENESS! In commemoration of MPS Awareness Day, we invited some of the key experts in the field of MPS disorders to share their insights into the importance of improving MPS Awareness. With the possible signs and symptoms of these disorders being so broad, many families find themselves chasing the signs of MPS in order to secure a diagnosis. That’s why every May, we enc...

2:34

MPS Day: Chase The Signs of MPS II

Просмотров 112Год назад

Join us in raising #MPSAWARENESS! This May, we invite you to #CHASETHESIGNS and increase awareness for MPS II and other MPS diseases. MPS disorders are a group of rare, genetic diseases that affect an estimated 1 in 25,000 children born in the U.S. MPS II, also known as Hunter syndrome, is one of these rare conditions, which mainly affects boys. When seen in combination, a variety of common chi...

The Underlying Cause and Effect of MPS II

3:54

The Underlying Cause and Effect of MPS II

Просмотров 287Год назад

Hunter syndrome, also known as MPS II, is a rare progressive disorder that predominantly affects males. Here, we take a look at the underlying genetic causes of Hunter syndrome and explore how symptoms develop differently in attenuated and severe cases. If you suspect that your patient has MPS II, refer them to a geneticist. To learn more, visit hunterpatients.com/hcp US-NON-8761v1.0 01/23

Transition of Adolescents into Adulthood

8:30

Transition of Adolescents into Adulthood

Просмотров 538Год назад

As a child with MPS II goes through adolescence the gap between pediatric and adult care must be bridged. Here Doctor Christina Lampe highlights the importance of embedding transition care as a key part of adolescent health provision.

2:28

Be MPS Aware This May

Просмотров 1223 года назад

Help us #ChaseTheSigns during the month of May, to raise awareness for MPS II and other MPS diseases. To help increase awareness, key experts in the field share their insight into why awareness of these diseases is so important. They also offer advice for what to do if you suspect you or a loved one may have an MPS disease. Visit hunterpatients.com and talk to your doctor for more information a...

Chase The Signs of MPS II (Hunter Syndrome)

2:14

Chase The Signs of MPS II (Hunter Syndrome)

Просмотров 4483 года назад

Help us #ChaseTheSigns during the month of May, to raise awareness for MPS II and other MPS diseases. The mucopolysaccharidoses (MPS) are a group of rare, genetic diseases that affect 1 in 25,000 children born in the U.S. MPS II, also known as Hunter syndrome, is one of these rare conditions, which mainly affects boys. Like many rare diseases, diagnosis of Hunter syndrome can be delayed by many...

Raising Awareness for Hunter Syndrome with The Balancing Act

10:18

Raising Awareness for Hunter Syndrome with The Balancing Act

Просмотров 1803 года назад

Finding an underlying cause to a child’s long list of illnesses and repeat visits to the pediatrician can be tough - but pin-pointing the problem can also be a huge relief. Dr. Barbara Burton, MD, Professor of Pediatrics, Northwestern University; Dr. David Molter, Professor of Otolaryngology, Washington University School of Medicine, at St. Louis; Carrie Dunn, a parent/caregiver and her son, Ja...