Bloody porphyria...

[Porphyriamaniac]

It's taken a lot for me to post this picture as I look so minging, but I am putting my daft vanity to one side to raise awareness. The picture shows my skin as normal with minimal makeup and then after sun exposure even after wearing factor 50! What you can see are bullae and blisters and general inflammation from the porphyrins(think human chlorophyll) that my liver spits out into my bloodstream getting deposited under my skin and reacting with sunlight. I don't know where else to post as I can't seem to find any porphyria forums or anyone to talk to with the same thing, I've been in touch with the British porphyria foundation but no reply as yet. So I'm posting here as it is liver related after all, maybe it might help someone and they won't feel like I do with little advice? For instance, I would love to know if I could do anything help the blisters heal any quicker!? Can't find any advice. Now 26 weeks till a possible haematology appointment 😩 seems like such a silly thing compared to others struggles but my skin has my confidence in tatters, the blisters on my face and hands really hurt and take an age to heal and the hairy face is frankly an embarrasment. I worry about my liver more and more as this has been going on over 3 years now with still no treatment in sight, I'm loading iron too (possible cause). Anyway enough with the pity party! 😁 I want to raise some awareness about it to help others. I'm thankful that it will be eventually treatable, some of the cutaneous ones are not and affect babies from birth so badly it's heartbreaking and affects their everyday life so much they have to live in the darkness. Thanks for listening you lot, youre all great! Have a read of the link below if you'd like to understand it better. Xxxx

britishlivertrust.org.uk/li...

[Bevmc]

Hi

If it’s liver related have you seen a Hepatologist?

I really hope you find support, it’s an awful feeling when you’re left in the dark and I completely understand your confidence being hit. I have PBC and would be struggling without the advice and support I get from fellow sufferers. I wish you loads of luck and salute your reaching out to others.

😊😊

[Porphyriamaniac in reply to Bevmc]

Hi Bev, hope you are well today? I don't think my gp really knows where to send me! 😂 he's plumped for the haemotologist as I have raised ferritin and tranferrin saturation also so that can be investigated aswell. He knows about as much about it as I do, they must just skim over it at uni with it being rare. I've tried to look into who I should be seeing and it's quite conflicting, some say haemo, gastro, hepatologist,dermatologist or a combination of all! I can't even find advice as to that really, there's not much out there. I'm going to speak to my gp again, see if he can get me seen any sooner. Maybe by the time somebody comes looking for info on here i might be able to answer some of their queries/worries. I will let you know how I get on anyway. Take care. ☺☺Xxxx

[Mama41]

Hello. Although I have no knowledge on your condition I've just had a quick look on Facebook and there is a few groups on there that may be able to answer your questions.

Best wishes xx

[Porphyriamaniac in reply to Mama41]

Hi mama, I never even thought of that! 😀I've got a Facebook aversion but I might have to log in and have a look. Thankyou. Xxxx

[Mama41 in reply to Porphyriamaniac]

You're welcome.As someone with a rare liver cancer I find the patient led groups on Facebook are much more useful than sites such as the British Liver Trust.

Let us know how you get on 😊X

[Porphyriamaniac in reply to Mama41]

I've just been reading through your previous posts mama. Wow, you're a trooper! Puts my issues into perspective... How are you keeping? Hope you are well? I will let you know how I get on, all the best to you. Xxxx

[Mama41 in reply to Porphyriamaniac]

I'm doing good thank you. It's been a long road but I feel really well at the moment 😊

Xx

[Porphyriamaniac in reply to Mama41]

Great to hear 😁 xxxx

[LorraineLouise]

Thank you for sharing. Another part of this disease I knew nothing about. It’s through posts like yours that we all learn from each other. I’ve had various skin issues throughout my journey and have gone to dermatologist. He knew nothing about PBC and has done nothing to help my rashes. The very frustrating part of PBC is that other than my gastroenterologist, I had to explain to other drs what PBC is. It is my hope than you get the help you so deserve. Stay strong and again thank you for sharing. You will be in my prayers. 🙏🏻🙏🏻🙏🏻

[Porphyriamaniac in reply to LorraineLouise]

Hi Lorrainelouise, hope you are well? Thanks for your reply. I didn't know about skin symptoms with pbc, I had a little read up about pbc when I saw it mentioned on here but only basic, so I have learnt something new today aswell! 😊 I do like to educate myself as much as I can. I'm sorry you've struggled with skin symptoms also ☹. I had to really push for diagnosis and I struggle to explain it to others aswell, GPS just dont understand some things well enough to be of much help. I hope I can be of some help to someone one day. Thankyou for your good wishes and prayers ☺ its very much appreciated. Xxxx

[jojokarak]

Hiya I was in limbo like you at first I got cirrhosis through polycystic ovaries and as far as I am aware it's quite rare after years of dealing with both conditions even now I have only understood that the gastro takes the lead and the haematology and gynecology then communicate to gastro and treatment is then suggested...

Even after my transplant I am still entangled in the web of consultants but I know they will give me the correct treatment again

I also suffer with hirsutism and psoriasis so I understand your worries about vanity for me it's easier after everything I have been through I don't give a shit what people say or think about me, obviously yours will be a little different having blisters as we all know how painful those blighters can be.

All I can offer is hope that the doctors will get there eventually with treatment options 😘

[Porphyriamaniac in reply to jojokarak]

Hi jojo, hope you're keeping Well? I think it might be like that for me with more than one consultant involved, I can't seem to get a straight answer on that. Your reply gives me hope that I'll get sorted eventually 😊 been a long faff. Yeah the hirsutism....☹☹ it's the worst! I joke to my sister when it starts growing back that I'm due my shave! 😂 I'm not very vain in general really and i do try n laugh n my fiancee n family are great but it sometimes gets me down and I tend to leave my hair down and hide behind that a bit, i wish i had more of your attitude towards it and I can understand why you don't give a shit with all you've been through besides, it's not important in the grand scheme is it 😁 thanks for reminding me of that! 😙😙 xxxx

[Porphyriamaniac]

Thanks for all replies on here, very much appreciated 😁. Ive now found a Facebook group and I've been talking to others with the same condition, they seem shocked at how bad my skin is and i thought it was just pretty typical!? 🤔 anyway it's nice to talk to others with it. From what I've been reading, it's not as easily or quickly sorted as I first thought 😕some been on phlebotomies for years and not cured 🤦, more like a chronic illness. Anyway, this is just a little update on things, still no appointment with haemo through but trying to stay positive whilst avoiding the sun and shadow jumping for my life! 😁 love to you all. xxxx