How did 'Pink Disease' brought on Bronchiectasis. My Gp's never heard of Pink Disease.

[lovinggrandmother]

I understand the Mercury poisoning developed into Pink Disease which damaged lining of my lungs. They collapsed when I was 13 yrs old. My mum was told it could happen as 25% of babies end up with collapsed lungs and later bronchiectasis among with other complaints as they mature.

[stone-UK]

Hi

Never heard of it.

Found this.

pinkdisease.org/whatisPD.htm

There is support group.

pinkdisease.org/

[lovinggrandmother in reply to stone-UK]

Hi, Thanks for the info but I tried to join support group and got an email from past member saying it wasn;t running any more but I did get information about Pink Disease that I never knew.

[Hidden]

Yes,I remember when one of my babies had very bright feet,the Docs.were worried he had pinks disease (soles of feet) apparently it was one of the signs of this kidney disease.Fortunately he did not,but I believe it was a not so rare illness at that time.xx

[skinnylizzy59]

Hurray, someone else with Pink's Disease. I am now 73 and I was told I had Pink's Disease as a baby or 10 months and thereafter had a 'weak chest', I had to wear a Liberty bodice into my teens and always wrap up warm! So when I started with bronchiecstasis of course I was questioned about how it started and when I mentioned Pink's Disease they just looked at me as though I was talking nonsence until someone said that it was related to whooping cough. As a child I had to visit a chest clinic annually until I was discharged. It all started again when I was in my late 50's and was referred to the local chest clinic after 2 years of chest infections and I've never looked back. I now go to Papworth Hospital regularly and receive the best treatment ever. I still have the occasional exacerbation but it is all under control. I have just completed a Pulmonary Rehab. course and feel fine. Take care. Lizzy xx

[lovinggrandmother in reply to skinnylizzy59]

Hi Lizzy, At last another Pinkey. My GP's throughout the years have always looked at me as though I'm nuts. I tried to join a support group and got a nice email back to say the group wasn't running any more but I did get a lot of info which now makes a lot of sense to me. I read Pink Disease causes Mercury Poisoning which damages the lungs as well as lots of other complaints. I'm 64 now and was healthy until 6 months old. One of the things that caused Pink Disease was the mercury they used in teething formulas. They stopped using mercury iIn the mid 50's so we are probably a dying breed. Thank goodness. I've been ill with, among other things, my lungs since they collapsed when I was 13 years old although the doctors knew that would happen at some point. Best wishes, lovinggrandmother. PS I also had to wear a liberty bodice for many years. At first they had tiny rubber buttons then later I had ones that just slipped over my head. Of course I also had to wear a vest!

[Trytohelper in reply to skinnylizzy59]

My husband had pink's disease as a baby and nearly died. We pretty sure that lead to his bronchiectasis. Never managed to get to Papworth, we heard about it too late really. He died this year, not from the Bronch, but from pancreatic cancer. In my mind, this was brought on by his medication, which he never tolerated at all well.

[HungryHufflepuff in reply to Trytohelper]

I’m very sorry for your loss. I had never heard of pink’s disease so don’t have anything relevant to say but just wanted to say hello and welcome.

[Trytohelper in reply to HungryHufflepuff]

Thankyou for your kindness. I do appreciate your replying. Do you have lung issues also ?

[Trytohelper in reply to Trytohelper]

Sorry HungryHufflepuff - that was a daft question 😂.

[HungryHufflepuff in reply to Trytohelper]

No worries! It wasn't daft, many people are members of this community because a loved one has lung issues. But yes I do also.

[Hidden]

Oh liberty bodices! That brings back memories. I used to hate mine as they had tiny buttons up the front and took ages to fasten and unfasten. when I got too hot, I'd scream all the time mum was struggling to undo them so I could get rid of the darned thing!! That with a vest beneath in winter, and mum rubbing wintergreen on my chest and back - I was a slave to my chest then, but had no problems for years until about 10 years ago.

[pollyjj in reply to Hidden]

I remember those buttons, they were rubber and went sticky as the bodice got older.

polly xx

[skinnylizzy59]

Thanks for the memories of liberty bodices and the buttons. As I got older mine had loops on the sides for suspenders and I had to wear thick, knitted stockings. Those were the days - or were they? Take care everyone. Lizzy.

[Tanzy12]

My cousin had pinks disease as a baby. My aunt had to push her round in her pram for miles as she would never settle. She ended up with a very weak chest she could not have milk. She unfortunately is no longer with us. I have never heard of anyone else with this. Keep safe x