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HEREDITARY ANGIOEDEMA (HAE)

Living with HAE

We hear from an incredible HAE patient, who inherited this rare disease from her father, who inherited it from his. Her two sisters also live with this disease. This brave patient kindly shares her HAE story with us.

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I live with HAE. And I live my life to its fullest.

Born with HAE, this patient is now aged 33. She’s lived with this disease for her entire life. Here, she talks about her passion for travelling, her successful finance career, and how having HAE has never stopped her doing the things she loves.

HAE Patient

Knowing my limits

My greatest love is travelling, especially visiting developing countries. When you travel to these places and you have angioedema, you must go prepared and be aware that it’s likely you will have an episode while you’re away. When you’re travelling, you tend to go with the flow and it’s this uncertainty that can result in an episode. I also like to get involved in adventure sports, but any bang or muscle strain usually causes swelling in that area. For example, I was doing Canopy (a set of aerial rope slides) in Costa Rica and after a few hours of putting pressure on my arm it began to swell. The adventure ends with a bungee-style jump, which I couldn’t do because I didn’t want to risk more serious swelling.

Growing up with HAE

My personal experience hasn’t been all bad. I have always had access to treatment thanks to the help of great professionals, patient organisations, and my parents. They have moved heaven and earth to provide me with the best life. My episodes weren’t frequent during the first 30 years of my life and since then they haven’t been that serious if I compare them to how I’ve seen other people suffer.

When I was little, I said I had a bad tummy, but to tell you the truth I found it normal. I didn’t differentiate between being ill like anybody else or suffering from HAE, so I lived a very normal childhood.

During adolescence, it bothered me that my face would swell up because it made me feel embarrassed. In fact, I still feel a bit embarrassed when people stare.

HAE Sufferer

A turning point

Turning 30 was a turning point for my disease. The morning of my 30th birthday I woke up with a swollen face and since then the frequency of the episodes has increased considerably. There have been times where in one week I’ve suffered three swellings in the larynx – that’s scary. I have also started experiencingurticaria (also known as Hives) and no doctor has been able to diagnose the cause. I don’t have a lot of medical knowledge, but I am pretty sure that the two are linked.

“In the future, I hope that everybody with this disease is correctly diagnosed.”

HAE Patient Story

HAE

Anonymous

Moving countries

When I moved to England and then to Malta, I had to look for hospitals and a way of obtaining treatment. This process was straightforward thanks to patient organisations with access and contacts in many countries. After a few weeks, I got hold of the contact details of doctors with knowledge of HAE. These organisations give you access to information and motivate you to learn more about the disease. All of this creates a way forward for patients with HAE.

Life and work

It is not easy to work when you have HAE, especially in such a competitive world as investment banking. I’ve woken up several times with stomach ache, bowel pain and swelling around the lungs – this puts a lot of pressure on the chest, it even makes it difficult to speak. Different parts of the body become swollen, you feel very tired, yet you don’t want to miss too many days off work. It is exhausting, and it makes you frustrated, depressed, and angry.

I’ve decided I don’t want children, but that doesn’t stop me thinking about how I would cope with parenthood. There are people willing to take the risk knowing that there’s a 50% possibility of passing on the disease. I don’t want children, but if I did I don’t think I would risk going through a pregnancy because it’s too uncertain.

In the future, I hope that everybody with this disease is correctly diagnosed without having to go through the unnecessary frustration of wondering what’s happening to their bodies.

There’s lots more to tell you about HAE:

Learn more about HAE

Name: Anonymous

Living with: HAE

Location: Malta

First signs & symptoms: She was born with HAE and inherited the disease from her father, who inherited it from his. It has always been a part of her life.

To learn more about this rare disease, please visit:

menothae.com

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These organisations give you access to information and motivate you to learn more about the disease. All of this creates a way forward for patients with HAE.

HAE Patient Story

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