I am glad that I found this site, I followed a link and it brought me to you. I am 77 years old and I have multiple health problems. I have recently come out of hospital after an eleven day stay with pneumonia. Amongst other health problems I have a very rare inherited blood disorder called porphyria, not much is known about this condition, however doctors appear to be coming more aware.

34 Replies

  • Hello MaryLip and welcome to the forum. :)

  • Hi MaryLip, welcome for a chin wag. Xx

  • Hello,so pleased you are out of hospital now, please keep posting we are all very friendly here. Take care 😊 xxx Bernadette

  • Thank you for your welcomes, I appreciate them. I only joined a couple of days ago and already I am learning. The consultants at the hospital suspect that I may have COPD, I have an appointment at the chest clinic sometime next week.

  • Warmest welcome am so pleased you found us, we have so many warm friendly kind people on here I just know your going to have s brighter day x

  • Pleased to meet you Mary x

  • Hello and welcome. Nice to hear from you. Drop in anytime for support, advice or just a chat. Good luck with the appointment next week.

    Take care. Pam XXX

  • Hi and welcome have read about porphyria when i was looking into MACROCYTOSIS.

    Would be intrested to know more on one conditiins porphyria and how you found out and have doc's done any dna test or out

  • I shall post you some links, Jeff, porphyria is a very complicated disease.

  • Hello Mary, and welcome from me too! Porphyria as I recall was one of the conditions King George 1 or maybe11 had, so you are in right royal company dear, though I'm sure you could do without the honour. It shows up via ones "Plumbing" to put it delicately (not that we are all that delicate on here". I believe there are some treatments available now so trust all is good on that front COPD is a bit of a beast when you are first diagnosed, but there are many of us who have lived with that and asthma for a lot of years. So nice to see you here and look forward to your posts with interest.

  • I am actually a very delicate person Dragoum! ..........Believe that and you will believe anything xxx 😂😂😂😂

  • Hahaha..

  • :) :) :) my haematologist is convinced that everyone who has porphyria has royal blood. I doubt it, my lot were Tinkers from Southern Ireland.

  • Not everyone is conceived the right side of the blanket Mary, maybe one of your beautiful ancestors, with her green eyes and midnight black hair, caught the eye of a lustful member of the court of some English king on the prowl in Ireland - they did a lot of prowling - and the inevitable took place. Like they say, it's a wise child that knows its own father! If recent TV shows are to be believed some very unlikely people can trace their ancestry back to John of Gaunt or Edward 1st. I think I agree with your haematologist, your highness!

  • Just curtsy please. I have read that the then Prince of Wales who became Edward V11 was caught in Ireland misbehaving. My roots are Irish, mmm, I wonder if I have an unclaimed fortune befitting my royal birth. :) :) :)

  • No harm in looking dear, but I think you'll just have to content yourself with the porphyria! (Curtsies Gracefully!)

  • I think porphyria is enough to cope with together possible COPD, without being a royal. :)

  • Nice to meet you Mary and hope to learn more about you in the future. It must be good to be home again and hope you make a good recovery. Xxxxx

  • Welcome to this forum. It is brilliant, very helpful, informative and supportive. Forgive the personal comment but I love the photo and you don't look your age. I have heard of porphyria but I've forgotten what the connection is.

    All the best


  • Just read the other replies, I knew it was aristocratic.

  • Hello Marylip glad you found us its a great place for advice and support stay well. x

  • Dragonmum is quite right. Porphyria is often thought of as a Royal disease because of possible connections with royalty. George 3rd is supposed to have had it and I saw a programme tracing it back even further and there is speculation that Mary Queen of Scots had it too and even a granddaughter of Queen Victoria. I have an online friend with it too..

    I hope yours isn't too severe and you are able to stay out of hospital.

  • Thank you very much, I understand that the Queen's cousin, Prince William of Gloucester had it, he was diagnosed in Africa. It is rumoured that Princess Margaret had it and that Prince Charles has it. I wrote to him and asked him and he wouldn't tell me, spoilsport. :)

  • :)

  • Hi, Mary, hello and welcome.

  • A Marylip Welcome , hope you find lots of help from the kind people on our forum. Lovely photo by the way, visit often and you will find lots to interest and inform you, warmest wishes, Polly X

  • Thank you very much, Polly.

  • Welcome

  • Welcome to the forum Mary :)

  • Welcome Mary. Glad your home & feeling better. Nan

  • Hi there Mary,so glad you are with us. Looking forward to chatting with you.

  • Welcome Mary

  • Hi Marylip, welcome to the forum, i am new here too and have varying illnesses but Asthma being the wost one. Love your photo it made me want to reply to you :D

    Hope you are well


  • Thank you for contacting me, Toni. This is a very friendly group and I am pleased that I have found it. I am just recovering from pneumonia and I have to have tests to see if I have COPD. Mary

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