Understanding Pseudoxanthoma Elasticum (PXE)

For those diagnosed with Pseudoxanthoma Elasticum (PXE), dealing with both the physical and emotional impact can be challenging.

Four years ago, my husband was diagnosed with PXE so as a family we are aware of the difficulties faced.

For those that are unaware of this very rare condition, Pseudoxanthoma Elasticum is an inherited disorder caused by mutations on the ABCC6 gene that causes various elastic tissues in the body to become mineralized.

The emotional impact of PXE made itself known within our family when my husband began to rapidly lose his sight.

We soon discovered that finding the right medical help was a huge challenge.

No medical specialist seemed to be aware of this condition. Even the cardiovascular specialist that he saw admitted that he “googled” PXE the night before our appointment.

We soon came to realise, however, that PXE did bring with it many gifts. Both my husband and I agree that our lives are far better as a result.

Applying knowledge gained throughout my life coaching career enabled us to change our perception of this disease and our lives.

Recognising that I had a unique combination of PXE knowledge AND a wealth of life coaching/NLP skills allowed me to see that I could also help others with this condition. I will be sharing top tips with you regularly so that you too can live the best possible life as a result of PXE.

My first top tip addresses belief. What you believe about PXE will either positively or negatively impact not only your life but your health. A belief is simply something that you perceive to be true.

If you decide that PXE is the worst possible thing that could have ever been diagnosed, then you will live your life accordingly to this belief.

You may find yourself making decisions which negatively impact your life believing that what you are experiencing is a disaster.

You may find yourself wallowing in self-pity and blaming PXE for existence instead of a life.

I’m pretty sure that many people diagnosed with this condition have experienced these feelings. But it’s not okay to stay in these feelings.

We decided to move through, and you can too.

To move through these feelings, just as we did you need to CHANGE YOUR BELIEF. You can do this simply by pretending that you have an opposing belief.

For example:

Ditch “PXE is a terrible disease and my life will never be the same again”.

Replace this with “PXE is a manageable condition and I’m going to improve my life as a result”.

What you believe defines your actions and behaviours. Someone who believes that PXE is a terrible disease won’t see the gifts within it because they are only looking for evidence that it’s terrible.

Someone who believes that PXE is a manageable condition that enhances their life will live an enhanced life as a result because they will spot and seek opportunities to make their life better.

If you find yourself stuck with a life limiting belief as a result of PXE, then I’d recommend pretending for 1 day initially that PXE is a gift. If you find that a challenge, then borrow my belief. I’m sending it to you right now.

Imagining that PXE is a gift, will allow you to see the gifts.

You cannot control the fact that you have PXE. Trying to wish that you didn’t have it, will only cause you to stress, and impact your health further.

Deciding to see PXE in a more positive light, will lead to a more positive life which will be better for your health.

Pretending to believe that PXE is a gift will bring you better feelings. You may then decide to ‘positively believe’ for another day, and another, until like us you truly believe it.

Here are just a few of the gifts that we have discovered within PXE since changing our belief:

1. We live for today ‘just in case’ my husband’s sight deteriorates. It’s a wonderful excuse to go to the cinema more often. We no longer procrastinate about holidays; we just book them and go. We work less and play more. We have travelled to many new countries as a result and experienced a variety of wonderful cultures.
2. We’ve had some wonderful conversations with people from all over the world who have PXE.
3. We’ve met some lovely people in hospital waiting rooms and had great conversations.
4. We’ve had the wonderful gift of a ‘values re-alignment’. We know now what is REALLY important to us and live our lives accordingly. We appreciate that PXE has allowed us to identify our values.
5. I use my husband’s story within my motivational talks. I share his story to inspire others. I tell others that we have learnt to REALLY live as a result of PXE. And then I remind them that it’s the way we should all be living anyway. I remind them that they don’t have to wait to be diagnosed with a rare genetic disorder to really begin to live! As a result, many, many people have made positive and powerful changes in their lives.
6. My husband drives the car that brings him joy, just in case one day he can’t.
7. We walk SO MUCH MORE to improve my husband’s circulation. We are probably healthier as a result.
8. His story is now published in the final chapter of my self-help book! He was diagnosed as I was writing the book and felt it essential to include it to help others. You can find it here: https://amzn.to/2W8X8Gk

I’d love to hear your own experiences of PXE and would love to connect with you. Please feel free to email me and share your own story!