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Congrès International des Porphyries à Bordeaux - France

Bonjour,

L'association française des malades atteints de porphyries organise le 25 juin 2017 le congrès international des Porphyries.
L'occasion d'y rencontrer d'autres patients de votre porphyrie et de pouvoir échanger avec eux, d'être informé des dernières avancées de la recherche, etc.
Plus d'infos et inscription ici: https://icpp2017.org/patient-day/

martacampabadal
moderator

Thanks for sharing! We'll tweet the link

Thank you so much!

porphyria cutanea tarda

Hello.. could anyone inform me of any alternative treatment for PCT which is not bleeding... 10 years ago I was diagnosed with PCT and I controlled it with bleedings... now again I have the symptoms... and I am looking for some alternative treatment... thank you.

Notice: This text content has been translated automatically by a third-party service.

Tihana
moderator

Dear Ignacio, it's been a while since you posted on the community but I hope you did find some help. I've tagged all the posts I could find mentioning Porphyria Cutanea Tarda, so you can get in contact with others with similar experiences. A list of different tags can be found on the right side of the Meet section. Here's the posts with the Porphyria Cutanea Tarda tag: https://www.rareconnect.org/en/community/p...

Best,
Tihana

Porphyria cutanea tarda

I have been a porphyria patient since 2010, since in Austria there is hardly a doctor's experience with this rare disease and my porphyria excretion over the urine has been around 1390 g / 24h for a long time, I turn to you. Has anyone experience like me the total porphyrins come back to a normal value.
Mfg
Elfriede

Tihana
moderator

Dear Elfriede, it's been a while since you posted on the community but I hope you did find some help. I've tagged all the posts I could find mentioning Porphyria Cutanea Tarda, so you can get in contact with others with similar experiences. A list of different tags can be found on the right side of the Meet section. Here's the posts with the Porphyria Cutanea Tarda tag: https://www.rareconnect.org/en/community/p...

Best,
Tihana

Finally an answer

After 25 years of seeing doctors with symptoms I had a tonic clonic seizure. 12 days in the hospital and I was discharged home and called 3 days later with the results of the porphyria urine testing. The neurologist at the hospital thought I had encephalitis or porphyria he didn't know how to treat.

I have been out of the hospital 7 days and symptoms are returning. I received no treatment at the hospital and my hemotologist is referring me to Emory University. I trust God to keep me and at the same time I am praying that I can be seen by knowledgeable doctors that can put their ego to side to help me live well. I have reached out to UAB and Mt Sanai to get an appointment. In Georgia once you have a seizure that renders you unconscious you can not drive for 6months. Finding care for porphyria is my priority at this time.

Tihana
moderator

Hi and welcome to RareConnect. My name is Tihana and I work as an online community manager here. I hope you will find the answers you are searching for. Also visit the Learn section of the community where you have relevant documents and patient groups and the Members section where you can find a map with the locations of other members of the community. You can send them friend requests and once they accept you, you contact them by private messages.

For any further help, do not hesitate to contact me.
Best,
Tihana

Why is so hard to find our treatment everywhere?

Hello,
I want to share a frustration lol. Why is so hard to find our treatment? In resume I wanted to live in Mexico.. I launched a legal process and I lost. I have an opportunity to move in Canada but I was explained how can be hard to receive the treatment in a timing manner.. My last one! An offer in Australia where according to the Porphyria association it can take up to 8 days " minimum" for the approval only and from there to order the medicine.. so, I live in Belgium where I just have to give a call or go to urgencies and receive the treatment in less than 1hour.Don't take me wrong I love Belgium but, why it has to be soooo complicated every where else!
I just stop looking for opportunities because there is not place for a person with Porphyria. Grr :(.

martacampabadal
moderator

I know how frustrating it is to access to treatment in different countries...

Have you contacted Porphyria Canada and Porphyria Mexico? Maybe they can give you more specific information about medicine access in these 2 countries.
https://www.rareconnect.org/en/community/p...
https://www.rareconnect.org/en/community/p...

Cheers!
Marta

Porphyria's Collected Infos

I do not know how to highlight / to offer this site where I am going to collect a lot of infos on Acute Porphirias.

Do you find interesting or useful?
Thank you.

https://mappingporphyria.wordpress.com/

I just check your site and it's very good. I'm sure will be useful.
Thank you! :)

SandraRC
moderator

Porphyria's Community Map

Hello everyone!

Maybe you already know that in the Members section there is a new world map. It is a more visual and fast way to contact other community members.

https://www.rareconnect.org/en/community/p...

3 important things:

1) To appear on the map you only have to edit your profile and add the location. If you already have done it, you can also specify your city, even zip code.
https://www.rareconnect.org/en/profile/edit

2) Unless you have the profile marked as public, the information on the map is only visible for members that have registered to the community. This means that visitors may see the map but not the spots and the links.

3) If you wish, you can also make your spot in the map only visible for your friends within the community. This option can be changed always from your profile.

If you have any question, leave me a comment below!