ARE YOU READY TO GET A GLIMPSE OF WHAT IT IS LIKE TO LIVE WITH PAH?

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This book is not intended for US audiences

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For other language versions please click the flag below:

This book is not intended for US audiences

INTRODUCTION - ENTER THE WORLD OF PAHUMAN.

“I WOULD DESCRIBE PAH AS LIKE BEING IN A CAR WHICH WON’T GO OVER 10 KPH" - PATIENT WITH PAH

Being diagnosed with PAH may be hard to accept. It could cause a variety of feelings, from shock and disbelief, to anger, fear, or sadness. However, it may also be a relief for someone to leave uncertainty behind, to have a name for their condition, and find out that it can be managed with the optimal treatment.

 

INTRODUCTION - ENTER THE WORLD OF PAHUMAN.
About this eBook

About this eBook

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UNDERSTANDING PAH

UNDERSTANDING PAH

“IT’S LIKE CLIMBING A MOUNTAIN...LIKE SOMETHING IS PUSHING YOU BACK ALL THE TIME.” - PATIENT WITH PAH

Our bodies are amazing at doing what we want them to. When we run for a bus, or reach for our phones, our bodies instantly translate the oxygen we breathe and our energy reserves into coordinated movement, and we don’t have to give it a second’s thought.

It may be hard to believe, but for people living with PAH simple everyday tasks that you and I take for granted can feel as tough as climbing the summit of Everest.

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What Is Pulmonary Arterial Hypertension (PAH)?

PAH IS A SERIOUS CONDITION THAT AFFECTS THE BLOOD VESSELS THAT CARRY BLOOD FROM THE HEART TO THE LUNGS.

To understand more about PAH, first it helps to understand how the heart works.

What Is Pulmonary Arterial Hypertension (PAH)?
What is PAH video?

What is PAH video?

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THE ROLE OF THE HEART

THE ROLE OF THE HEART

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WHAT HAPPENS TO THE PULMONARY ARTERIES IN PAH?

WHAT HAPPENS TO THE PULMONARY ARTERIES IN PAH?

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HOW DOES THIS CAUSE THE SYMPTOMS OF PAH?

HOW DOES THIS CAUSE THE SYMPTOMS OF PAH?

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SIGNS AND SYMPTOMS OF PAH

SIGNS AND SYMPTOMS OF PAH

THE FIRST SYMPTOMS ARE OFTEN NOTICED WHEN UNDERTAKING PHYSICAL ACTIVITIES, SUCH AS CLIMBING UP STAIRS, RUNNING, WALKING UPHILL, OR CARRYING BAGS.

As PAH progresses, these signs and symptoms may be experienced more often and may start to impact the patient’s ability to undertake everyday activities.

COMMON SYMPTOMS

COMMON SYMPTOMS

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WHO GETS PAH AND WHAT CAUSES IT?

"WE KNOW A LOT MORE NOW THAN WE USED TO ABOUT HOW THE DISEASE DEVELOPS, AND IT COULD BE ANYONE WHO FINDS THEY ARE DIAGNOSED WITH PAH."

 WHO GETS PAH AND WHAT CAUSES IT?
HOW COMMON IS PAH?

HOW COMMON IS PAH?

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What causes PAH?

What causes PAH?

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TYPES OF PAH

TYPES OF PAH

THERE ARE MANY TYPES OF PAH. OFTEN IT IS IDIOPATHIC, WHICH MEANS IT IS NOT LINKED TO ANY OTHER CONDITION. RARELY IT CAN RUN IN FAMILIES.

In some cases, PAH may be associated with other conditions, such as congenital heart disease or connective tissue disease. Some of the causes are known and some have yet to be identified. A PAH doctor can help people with PAH understand what type of PAH they have. Regardless of what type of PAH they have, the treatment options remain the same.

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DIAGNOSIS AND TREATMENT OF PAH

PAH IS A PROGRESSIVE DISEASE AND THE RATE AT WHICH IT WORSENS VARIES DEPENDING ON THE TYPE OF PAH.

Early diagnosis is important as it has been shown to be linked with better outcomes. However, PAH is difficult to diagnose. A key problem is that the early symptoms (breathlessness, dizziness and fatigue) are not very specific and can be easily confused with many other, more common conditions such as asthma, chronic obstructive pulmonary disease (COPD) or sleep apnea.

DIAGNOSIS AND TREATMENT OF PAH
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PROGRESSION OF PAH

PROGRESSION OF PAH

Functional Class is a common term used in PAH. It is a critical element of the assessment of patients with PAH and determining treatment planning.

CLASS I

CLASS I

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CLASS II

CLASS II

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CLASS III

CLASS III

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CLASS IV

CLASS IV

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PAH DIAGNOSTIC TESTS

"THERE IS NO SINGLE TEST TO DIAGNOSE PAH."

Due to its complexity, PAH is usually diagnosed at specialist centres and involves a series of tests to rule out other possible conditions, and confirm diagnosis.

PAH DIAGNOSTIC TESTS
ELECTROCARDIOGRAM (ECG)

ELECTROCARDIOGRAM (ECG)

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ECHOCARDIOGRAM

ECHOCARDIOGRAM

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VENTILATION / PERFUSION SCAN (V/Q SCAN)

VENTILATION / PERFUSION SCAN (V/Q SCAN)

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PULMONARY FUNCTION TESTS (PFT)

PULMONARY FUNCTION TESTS (PFT)

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RIGHT HEART CATHETERIZATION

RIGHT HEART CATHETERIZATION

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6-MINUTE WALK TEST

6-MINUTE WALK TEST

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PAH THERAPY OPTIONS

PAH THERAPY OPTIONS

IT IS IMPORTANT TO START TREATING PAH AS EARLY AS POSSIBLE.

Treating PAH as directed by a PAH doctor can help keep PAH from getting worse. While there is no cure for PAH yet, there are treatments that can help people manage their PAH.

SPECIFIC TREATMENT OF PAH

SPECIFIC TREATMENT OF PAH

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Treatment pathway infographic

Treatment pathway infographic

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OTHER PAH TREATMENTS

OTHER PAH TREATMENTS

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MORE THAN ONE MEDICINE

MORE THAN ONE MEDICINE

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LUNG TRANSPLANTATION

LUNG TRANSPLANTATION

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BURDEN OF PAH

“IT’S NOT A GOOD FEELING – IT'S BAD TO BE DEPENDENT ON OTHERS. IT'S BAD TO ASK OTHER PEOPLE TO HELP YOU. YOU FEEL BAD. YOU FEEL INFERIOR – LIKE A SECOND CLASS CITIZEN” - PATIENT WITH PAH.

Whether walking to the local shops, picking up the children from school, meeting friends for a coffee, planning a holiday or the future, PAH is there at the forefront of their lives.

The international PAH patient and carer survey, supported by Actelion, revealed that the impact of PAH on those living with the condition extends far beyond the established physical symptoms of the disease itself.

BURDEN OF PAH
Survey Results

Survey Results

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The IMPACT OF PAH INFOGRAPHIC

The IMPACT OF PAH INFOGRAPHIC

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HEAR FROM THE EXPERTS BEHIND THE SURVEY

HEAR FROM THE EXPERTS BEHIND THE SURVEY

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IMPACT OF PAH ON THE PATIENT

IMPACT OF PAH ON THE PATIENT

"IT TOTALLY CHANGES YOUR LIFE – YOU CAN’T IGNORE IT." - PATIENT WITH PAH

PAH affects many aspects of daily life and it can take some time to adjust to living with the condition. It is important to know that many patients share similar experiences as they adapt to life with PAH, as uncovered by the international survey.

EMOTIONAL WELLBEING

EMOTIONAL WELLBEING

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FRIENDS AND FAMILY

FRIENDS AND FAMILY

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HOME, WORK AND INCOME

HOME, WORK AND INCOME

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LEISURE ACTIVITIES

LEISURE ACTIVITIES

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IMPACT OF PAH ON THE CARER

"LIVING WITH SOMEONE WITH PAH IS LIKE NOT KNOWING WHAT TO EXPECT, I DON'T KNOW HOW IT WILL DEVELOP." - CARER

PAH affects many aspects of daily life and it can take some time to adjust to living with the condition. It is important to know that many carers share similar experiences as they adapt to looking after someone with PAH, as uncovered by the international survey.

IMPACT OF PAH ON THE CARER
EMOTIONAL WELLBEING

EMOTIONAL WELLBEING

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FRIENDS AND FAMILY

FRIENDS AND FAMILY

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HOME, WORK AND INCOME

HOME, WORK AND INCOME

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LEISURE ACTIVITIES

LEISURE ACTIVITIES

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PAH - PRACTICAL GUIDANCE

PAH - PRACTICAL GUIDANCE

EVERYONE WILL EXPERIENCE THEIR OWN REALITY OF LIVING WITH PAH.

If you are a patient with PAH, this section has been developed to provide you with additional information on what to expect when living with PAH and practical guidance to help you manage your feelings, manage your well-being, and move forward with a life beyond PAH.

Living with and managing PAH symptoms can have a significant emotional impact. It is important to know that you are not alone. These feelings are very common among people with PAH. Your family, friends and other important people in your life, together with your PAH doctor and your patient associations, are there to support you when you need it.

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HOW TO EXPLAIN PAH TO YOUR FAMILY AND FRIENDS

HOW TO EXPLAIN PAH TO YOUR FAMILY AND FRIENDS
SHARE YOUR THOUGHTS AND FEELINGS

SHARE YOUR THOUGHTS AND FEELINGS

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TALK ABOUT YOUR CONDITION

TALK ABOUT YOUR CONDITION

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TALKING TO PEOPLE WHO KNOW PAH

TALKING TO PEOPLE WHO KNOW PAH

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LEARN FROM OTHERS’ EXPERIENCES

LEARN FROM OTHERS’ EXPERIENCES

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TAKING CARE OF YOUR HEALTH

TAKING CARE OF YOUR HEALTH

SET GOALS AND MAKE ACTIVE CHOICES

SET GOALS AND MAKE ACTIVE CHOICES

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EATING HEALTHILY

EATING HEALTHILY

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EXERCISE AND PAH

EXERCISE AND PAH

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ADDITIONAL AREAS TO THINK ABOUT

ADDITIONAL AREAS TO THINK ABOUT
JOINING A PATIENT ASSOCIATION

JOINING A PATIENT ASSOCIATION

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MANAGING TIREDNESS

MANAGING TIREDNESS

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STARTING A FAMILY

STARTING A FAMILY

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WORKING

WORKING

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EDUCATION

EDUCATION

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SOCIAL SERVICES

SOCIAL SERVICES

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TRAVELLING

TRAVELLING

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YOU ARE NOT ALONE

YOU ARE NOT ALONE

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YOU ARE STILL YOU

YOU ARE STILL YOU

Regardless of the fact that you have just learned you have PAH, or have been living with PAH for a while, you are still you. Making adjustments to your everyday life, based on how you are feeling and what you want to do, will help you stay in control of your life.

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