The Rare Reality – What Is Life Like Living With A Rare Disease?

Rare diseases can affect an individual’s life in many ways, from expensive medical care costs to debilitating symptoms that impact physical, emotional, and social well-being.

In this article, we explore what it’s like living with a rare disease, including how it affects daily life, access to healthcare, and the challenges of living, working, or studying abroad. Through a personal case study of someone living with nephrotic syndrome, we’ll provide insight into the reality of navigating life with a rare condition.

In this article

• Living with a rare disease
• Can I still become an expat if I have a rare disease?
• Why do people travel abroad for medical treaments?

Living with a rare disease

It’s estimated that around 3.5 million people in the UK and between 25 and 30 million people in the U.S. live with a rare disease. This shows that while the diseases themselves are rare, living with one is more common than you might think.

Over 7,000 rare diseases are thought to exist, and new conditions are continually being identified, leaving many patients to face challenges such as delayed diagnoses, limited treatment options, and a lack of understanding or support.

Due to this, there is a lack of data surrounding the topic, particularly regarding diagnosis levels.

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Cade’s story – living with nephrotic syndrome

We spoke to Cade Morant, who lives with nephrotic syndrome, about what life is like with a rare disease.

What is nephrotic syndrome?

Nephrotic syndrome is a condition in which large amounts of protein leak into an individual’s urine. The condition, which is rare in adults, is thought to affect around one person per 30,000 people each year.

What are the symptoms of nephrotic syndrome?

The most common symptom of the disease is swelling, particularly around the eyes and face, but this can also occur in the fingers, legs, and abdomen. Protein leakage may also result in some people passing frothy urine.

Speaking about his symptoms, Cade said he started to experience swelling in his lower legs, which was very minor at first and would only be present in the evenings. However, the swelling worsened, and he made an appointment with his GP. The doctor carried out some blood tests, but these only ever came back clear.

After another few weeks, Cade struggled to complete simple everyday tasks, such as putting on his socks and shoes or walking. After booking an appointment with a different GP, who carried out blood pressure and urine dip tests, it was found that Cade’s body was leaking protein.

Following further examination through blood tests and a biopsy, Cade was officially diagnosed with nephrotic syndrome.

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How is nephrotic syndrome managed?

Since his diagnosis, Cade has tried many treatments to manage his condition. He currently takes four medications: one for phosphate management, a neural blocker, an antidepressant and a form of vitamin D supplement. 

Other medications used to manage nephrotic syndrome include (but are not limited to) water tablets to reduce water retention, anticoagulant treatments to reduce the risk of thrombosis, and cholesterol-lowering drugs.

Everyone living with nephrotic syndrome will respond to treatments differently. While some may only require one round of steroid treatment, others may not respond to treatment at all. This can lead to the kidneys eventually failing due to prolonged protein leakage. 

In order to treat this, an individual may require kidney dialysis or a kidney transplant. Cade has been having haemodialysis for almost nine years. Dialysis is essential as it helps keep Cade alive by filtering waste and excess fluid from his blood.

Cade performs haemodialysis at home, doing three-hour sessions four times a week. He previously had four-hour-long sessions three times a week, but although his blood levels were good, Cade felt generally unwell the following day. His new schedule has helped him to feel better.

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How can nephrotic syndrome physically affect someone’s day-to-day life?

After being diagnosed with nephrotic syndrome, Cade was advised to make adjustments to his diet and the amount of fluid he was drinking. This involved avoiding phosphate, potassium and salt and drinking one litre of water per day. 

Cade has been eating a whole-food, plant-based diet for a few years. This diet involves eating various fruits, vegetables, seeds, nuts, and legumes and avoiding highly processed and sugary foods. 

This particular diet has helped Cade restore his potassium levels and allowed him to stop taking his blood pressure medication and EPO injections. Cade’s phosphate medication and iron injections have also been reduced. 

However, despite these vast improvements, Cade still gets fatigued quickly and is often tired, affecting his productivity at work and home. It also means he struggles to go to the gym or work out due to lacking motivation and energy.

How can nephrotic syndrome affect people financially?

The level of financial strain on someone living with nephrotic syndrome can be different for every individual. Some people may be able to claim personal independence payment (PIP) if their condition affects their ability to carry out everyday tasks or they experience extra living costs to manage their disease. 

In the quarter ending October 2024, there were 230,000 registrations for PIP, meaning there are now over 3.6 million PIP claimants in England and Wales.

Cade previously qualified for the higher weekly rate of PIP, which currently stands at £108.55 for the daily living section and £75.75 for the mobility section. The amount you receive depends on how difficult you find everyday tasks and getting around, and is not affected by your income or savings.

Although Cade no longer qualifies for the higher PIP rate, he still receives monthly payments to cover the cost of electricity and water for his home dialysis.

However, one thing that Cade struggles with financially, in terms of his condition, is going on holiday abroad. Living with a rare disease can make taking out a travel insurance policy that covers all of your medical needs expensive. Most insurance providers don’t tend to cover pre-existing medical conditions in their standard policies*.

*William Russell won’t cover you for investigations, treatment, or medication relating to pre-existing medical conditions or related conditions—unless you tell us about them in your application, and we agree to cover them. We also provide only limited coverage for private medical treatment in the USA on certain policies.

What is a pre-existing medical condition?

Learn more about pre-existing medical conditions here

Can I still become an expat if I have a rare disease?

Moving abroad is a significant decision for anyone, and for those living with a rare disease, the process can feel even more daunting. Relocating to a new country requires thorough research and careful planning to ensure the destination aligns with your personal and medical needs.

For individuals with rare conditions, this research becomes even more critical, as some countries may not provide the necessary healthcare infrastructure, treatments, or support. It’s essential to consider various factors to determine whether a destination is viable and to plan for the unique challenges that may arise.

Things to consider when moving abroad with a rare disease

Here are a few key considerations for those living with a rare disease and thinking about moving abroad.

1/ Cost of living

Finances can play a major role in someone’s life if they live with a rare condition. For example, they may need to use a lot of electricity for at-home treatments, or they may be required to eat a certain kind of diet. These things can be expensive for someone with a rare disease, so it’s important only to consider moving to countries with a relatively affordable cost of living.

2/ Healthcare costs

Those with a rare condition may need to access healthcare frequently for regular treatments or unexpected hospital visits. It’s important to remember that healthcare isn’t free in every country. For example, countries like the U.S. and South Africa don’t have free healthcare, so these locations may not be a viable option for everyone. However, many countries do have established healthcare systems such as Australia, France, Belgium and Denmark.

3/ Public transport

For those living with a rare disease, public transport can be a very important factor when relocating to another country. Ideally, public transport would be frequent and have affordable fares, making it easy for people to attend any medical appointments, particularly those unable to drive. They should also have plenty of disability-friendly features, like ramps or lifts for those living with rare diseases such as muscular dystrophy, and raised markings on doors and buttons for those with rare eye conditions such as Stargardt disease.

4/ Climate

Although it may seem obvious to some, it is important to consider the climate of the location you’re thinking about moving to. Some rare conditions, such as hypohidrotic ectodermal dysplasia (HED), can be affected by heat, so anyone with this disease should avoid relocating to countries with very hot climates. This includes locations such as the United Arab Emirates, Singapore and Thailand. On the other hand, those with rare conditions affected by the cold, like cold agglutinin disease, should avoid moving to countries such as Canada, Sweden and Norway, as they have very cool climates.

5/ Availability and quality of medical treatments

One of the most important things to consider when relocating to another country is the availability and quality of medical treatments. For some people living with a rare disease, these treatments may be what keeps them alive, so it’s vital that they are available and can be given to a high standard. If not, this may lead to complications and cause an individual to become seriously ill. Before deciding on which country you’ll be relocating to, carry out thorough medical research to ensure that you can access the treatments you need and that these are delivered at a high quality.

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Why do people travel abroad for medical treatment?

According to ONS data, around 348,000 UK residents travelled abroad to receive some form of medical treatment in 2021. This is a 129.5% increase since 2018 when the figure stood at 151,609.

Every year, millions of U.S. residents also travel to other countries for medical care, with the most popular locations being Mexico, Canada, Central America, South America and the Caribbean.

The purpose of these visits may be for elective procedures, such as dental or cosmetic work, or for life-enhancing or saving treatments, such as organ and tissue transplantations or stem cell therapy.

Reasons people travel abroad for medical treatment

There are many reasons why people may choose to receive medical treatment abroad, including:

1. When a particular procedure or treatment is cheaper
2. When there are shorter waiting periods in another country
3. If a treatment is only available in certain countries

Those travelling to another country for medical treatment should conduct thorough research beforehand. This ensures they know potential risks and the steps to take if any issues arise. For this reason, it’s also important to purchase full medical insurance before travelling.

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Wherever you go, go with total peace of mind

At William Russell, we have over 30 years’ experience of helping expatriates finding best places in the world to move abroad and settle into their new lives overseas by providing world-class international health insurance. Plus, we produce lots of expert material to help you and your family adapt to life abroad.

Making the move to another country can be challenging. But no matter where you go, you can take one thing off your mind. William Russell offers international health insurance that covers you for everything from minor injuries to long hospital stays, and we also provide medical evacuations for patients who require emergency life or limb-threatening treatment where it’s not available locally.

Looking for international health insurance?

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