Collaborations, Downloads & Links

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This handy downloadable Emergency  Medical Card is perfect to have on hand for emergencies. This does not replace the Medic Alert Card which has your health records & doctors contact details on file, but is useful to have as an extra.

To download, follow the link below

Porphyria (genetic disorder) diagnosis medical concept on tablet screen with stethoscope..

ATM - Annals of Translational Medicine has an interesting publication, dated 2020 on Hyponatremia.

Hyponatremia is a common feature during the neurovisceral acute attacks which characterize hepatic porphyrias, as well as a sign of its severity.

To Read More ...........

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[Porphyria and inappropriate antidiuretic hormone syndrome]

Read More.....

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Download this handy tracker to record your symptoms, courtesy of Porphyria Life.

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As with any type of chronic illness, learning how to live and manage any form of illness is hard for anyone, trying to negotiate the minefield of telling family and friends is even more difficult.

  • How do you explain to your loved ones about your condition?

  • Dealing with reactions of family and friends?

  • Answering questions about your condition?

 We have put together some information based on different experiences in the form of a  fact sheet on the do's and dont's to help you negotiate this minefield.

 

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Cognitive Behavioral Therapy can be a powerful tool in the management of chronic illness

 

How does it work? Based on the concept that ones thought, feelings, physical sensations & actions are interconnected & that negative thoughts & feelings can trap one in a cycle. CBT encourages one to change negative patterns focusing on current issues rather than past ones. It involves practical ways to improves ones state of mind daily 

We have a free downloadable CBT Worksheet for you, record your thoughts daily, look at ways in which you could take the negative situation and create a positive thought process.

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This document highlights the importance of the 5 phase grieving process when dealing with chronic illness, working through the phases from denial to acceptance. Its important to go through these steps and take the time to acknowledge each phase, allowing one to come to terms with a diagnosis. Newly diagnosed patients suffering from a chronic disease will need time to adjust, as will their families thus a strong support system is a must!

This is a free downloadable document.

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This free downloadable E-Book on chronic inflammation explains what chronic inflammation is and how it can affect ones body.

In chronic inflammation, the effects linger, leaving the body in a constant state of panic.   Over time, chronic inflammation will start to have a negative impact on tissues and organs. Chronic inflammation can stick around for months or even years. It plays a role in the development of many diseases from autoimmune diseases to cancer.

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Are you suffering from chronic inflammation?

 

These questions in The Complete Guide to Chronic Inflammation Worksheet will help you better understand chronic inflammation and plan actions that may help alleviate your symptoms.

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Interesting read on the Porphyrias and the management of Anasthesia compiled by .....

Oxford British Journal of Anesthesia Porphyrias 

 

 

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Porphyria - British Liver Trust 

has loads of useful content with regards to the Acute Hepatic Porphyrias .

 

The link to their website is below. 

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Quite an interesting webinar series on the different aspects of Porphyria. Some may well find this worth checking out.

 

For more info on registering etc,  click on the View More tab which will take you to the document where you can click on the links.