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Living with Porphyria. How to live with Porphyria?
Can you be happy living with Porphyria? What do you have to do to be happy with Porphyria? Living with Porphyria can be difficult, but you have to fight to try to be happy. Have a look at things that other people have done to be happy with Porphyria
You can be happy in life if you want to. Don't let porphyria define you and push through the symptoms to get to the fun parts of life.
Posted Feb 27, 2017 by Cassandra 1000
Accept the situation, denial just makes you sick. Find out what triggers an attack and try to avoid them
Posted Jan 12, 2018 by Mari Blignault 1500
If you follow few simple rules, your life can be normal
Posted Jul 14, 2018 by Nadezda 750
A CALM AND HEALTHY LIFE IS BEST WAY TO LIVE
Posted Mar 30, 2019 by Marie 2500
Triggers for an acute attack. Find out what your triggers are and eliminate them. With an acute hepatic porphyria, like Variegate Porphyria, avoid the common triggers, alcohol, stress, dieting or fasting, infections, drugs, certain chemicals or environmental factors.
When you have an acute hepatic porphyria, make sure you have a good medical team that are knowledgeable about the disease, a patient treatment protocol or plan is essential to assist medical personnel when you may be admitted to hospital for treatment. This will advise the doctors on call, what to do, what treatment to administer, the dosage and who to contact for specialised assistance (usually be a national porphyria centre).
Newly diagnosed patients need to go through a grieving process, follow the 5 steps of grief, this will help you come to terms and find acceptance with what you have and the necessary lifestyle changes required.
Whilst it may not always be possible to control some triggers such as stress, you can find ways to reduce your stress levels, such as meditation, a hobby that you enjoy doing, anything that will allow you to relax and calm the mind. I do weekly yoga sessions and found that has helped me with breathing techniques and meditation so that when I start to feel stressed I can employ these techniques to assist with managing my stress.
Taking care of the skin is really important in the cutaneous porphyrias. The skin is very fragile and is prone to bruising, lesions and blistering. To avoid severe scaring it is important to take care of this organ from the outset. Avoid open wounds or sores becoming infected, not only will this leave scars but infections can often lead to triggering of acute attacks.
When you have an acute hepatic porphyria, make sure you have a good medical team that are knowledgeable about the disease, a patient treatment protocol or plan is essential to assist medical personnel when you may be admitted to hospital for treatment. This will advise the doctors on call, what to do, what treatment to administer, the dosage and who to contact for specialised assistance (usually be a national porphyria centre).
Newly diagnosed patients need to go through a grieving process, follow the 5 steps of grief, this will help you come to terms and find acceptance with what you have and the necessary lifestyle changes required.
Whilst it may not always be possible to control some triggers such as stress, you can find ways to reduce your stress levels, such as meditation, a hobby that you enjoy doing, anything that will allow you to relax and calm the mind. I do weekly yoga sessions and found that has helped me with breathing techniques and meditation so that when I start to feel stressed I can employ these techniques to assist with managing my stress.
Taking care of the skin is really important in the cutaneous porphyrias. The skin is very fragile and is prone to bruising, lesions and blistering. To avoid severe scaring it is important to take care of this organ from the outset. Avoid open wounds or sores becoming infected, not only will this leave scars but infections can often lead to triggering of acute attacks.
Posted Oct 5, 2021 by Carollynn 5770
