I'm so dry

[kcoffiner]

Just want to vent about being so dry. Sometimes I feel like the driest person in the world. I pray for a cure everyday.

Kim

[Scottietottie]

Hi Kim 

I don't know what to say. All we can do is alleviate symptoms and be thankful that SjS isn't noted for being terminal. Just interminable. Anything I can suggest has been suggested already. The usual products, humidifiers, moisture chamber glasses, moisturiser, medications.

The best hope looks to me like being gene therapy of some kind but it's way off on the distant horizon and I doubt I'll be around to see it. I think it will also be used for other diseases and conditions way before SjS because SjS is just not very common.

I'll listen when you vent though!

Take care - Scottie 

[pudmott]

Vent away Kim it needs to be said. my neighbour massaged my hands and arms last night &she couldnt get over how dry they were. As soon as she put lotion on my skin sucked it up.


pud

[irish]

I always suffer from the dryness more this time of year because of the pollen, dust etc. It has been very dry in the midwest and the wind is blowing so that all that dust and pollen is flying. This summer I haven't had my humidifier on because we had trouble with the well and our water and then we had company and people in and out of the house for about 5 weeks and just never got around to putting it out again. I am very stupid because I am suffering.

I don't know about the rest of you but I cough an hack so much that my voice box (larynx) swells up and gets very, very sore and I can hardly swallow or talk. I am oh so glad to put my CPAP on at night as it puts out some warm humidity and really makes me improve by morning. We all just have to bite the bullet. I usually have the humidifier on 24/7 365 days a year cause it helps so much. Guess I got lazy. Irish