Share your story - tell people about your porphyria...
How are you affected?
What would you tell other people?
What do doctors/text books say and what is it really like for you?
Show your colours by wearing purple to raise awareness of porphyria
Share across your social media using:
#MyPorphyria
#PurpleForPorphyria
#GPD2023
#Porphyria
Accurate Information Statement
This statement has been produced by GPAC with the support of patient advocacy organisations from around the world and with approval from international clinical and research networks
The global porphyria community is aware of potentially dangerous information being circulated across social media platforms and on various websites regarding the diagnosis, management, and treatment of the porphyrias. Unfortunately, some of the information is inaccurate, misquoted or taken out of context. Such information could be medically dangerous if taken as advice or guidance without input from a porphyria expert or qualified healthcare professional.
If you have concerns about your care, testing or general porphyria management, please connect with a recognised porphyria specialist/expert centre or your national porphyria patient organisation. These organisations will be best equipped to guide you toward appropriate testing and safe management/treatment for your porphyria.
THE SITUATION
Around the world, people are understandably concerned about the current outbreak of the Coronavirus disease (COVID-19). The situation is constantly changing and each country is managing the pandemic slightly differently.
The World Health Organisation provides a good and reliable source of information on the disease and ways to reduce its spread: https://www.who.int/emergencies/diseases/novel-coronavirus-2019
GPAC recommend that you follow the guidance provided by your own country’s Government and healthcare system with regards to travel/movement restrictions, and testing and management protocols for COVID-19.
CORONAVIRUS AND PORPHYRIA
Porphyria doctors have indicated that those with porphyria are not thought to be at any greater risk of catching COVID-19 than those without porphyria. However, for those with an acute porphyria it may be that the virus could trigger an acute porphyria attack as is the case when patients with porphyria have other severe illnesses such as flu. Similarly, people with other health conditions are being advised that they may be worse affected if they contract COVID-19, but the information on this is still emerging.
ADVICE for the porphyria community
1. Follow the Government’s advice on travel, reducing social contact, self-isolating, etc.
2. Follow the advice of the doctors providing porphyria care:
a. It may be that telephone consultations are provided, or non-urgent appointments are postponed.
3. For patients receiving regular treatments of Haem arginate, Panhematin, Givosiran:
a. The doctor/nurse/treatment centre will hopefully be making arrangements to ensure that treatment continues promptly and in a safe manner (whether this is at home, at a treatment centre or at a hospital).
b. But, if there is concern about accessing treatment or travelling for patients, encourage the patients to contact their treatment nurse/centre to discuss whether any arrangements need to be changed to ensure treatments continue safely.
c. It is advised that patients exhibiting a cough, a high temperature and/or shortness of breath advise their nurse/treatment centre before face-to-face contact, in case alternative arrangements need to be made to ensure that care continues in a safe manner for all concerned.
IF PORPHYRIA PATIENTS THINK THEY HAVE COVID-19:
1. Follow the Government’s advice regarding testing/managing COVID-19.
2. Follow the advice of the porphyria doctor/nurse for any additional guidance.
3. Recommend that patients have access to their Emergency Protocols/Plans as well as information on Safe Drugs which should be taken with them if they go to hospital.
Not all of this advice will be relevant to you – but GPAC is aware that we are all facing challenging and unpredictable times. It is completely understandable to be worried about the impact coronavirus may have on our porphyria communities – we hope that you will all try to strengthen your social media channels as means to stay in touch with others with porphyria.
FINALLY
we urge you all to follow the official advice from your local Government and hope you all stay safe and well.
Sue Burrell
GPAC President