Denise362
01-25-2007, 01:22 PM
Hi All,
I thought i would introduce myself again as i have not been on the site for a few years now.
My name is Denise and i live in York, North yorkshire. I have been suffering from severe discoid Lupus for about 12 years.
I thought i would share my story with you all. I will try and cut it short as not to bore you.
My dermotoligist drew a red herring for the first two years when i first got the cronic rash. i was living in the north east of England then. I was getting very frustrated as the rash was getting worse. We then moved to another part of the country as my husband was in the forces. I was eventually diagnosed as having severe discoid lupus three years later.
The rash on my face felt like someone had poured a boiling hot kettle of water all over my face. I had no skin on my lips so i could not even kiss my husband or children for about 4 years when i had really bad flares, i also could not eat properly as my lips used to swell up. i also lost alot of my hair. so like some of you i went through all the sniddy remarks and name calling. I was once even asked if someone was stubbing cigarettes out on my face!!!!
After years of cronic pain and discomfort and a massive of amount of tablets, creams injections into scalp nothing at all seemed to work.
I was told by my dermotoligist here that there was another doctor in the next city whom specializes in Lupus would i like to go and see him. i jumped at the chance and explained if i had to go to another country for treatment i would pay for it myself as i was so poorly.
My new dermotoligist still put me on all the same medication i had been on for years, i think that is normal procedure for a new patient.
Anyway after two years he asked me if i would like to go on a clinical trail injection. I discussed it with him in great detail and agrred to it. That was a year and a half ago. This man has changed my life tremendously. my husband was injecting me once a week, my skin is fantastic now i am down to one injection fortnightly.
i now have only 2 little scars on my face and do NOT have to wear makeup for the first time in years. I still have a few bald patches on my head but they are not active at all.
So after all these years i am totally pain free on my face but have now been diagnosed with systemic lupus.
I hope my story is of some inspiration to all you suffering from discoid lupus.
I am trying to get both my dermotoligist to let me have a copy of my photos from years ago when it was bad down to this day and i will post them on here.
Please dont suffer like i did if your medication is not helping.
Many thanks for reading this story.
Hope there is not to many spelling mistakes!!!!!
Denise
I thought i would introduce myself again as i have not been on the site for a few years now.
My name is Denise and i live in York, North yorkshire. I have been suffering from severe discoid Lupus for about 12 years.
I thought i would share my story with you all. I will try and cut it short as not to bore you.
My dermotoligist drew a red herring for the first two years when i first got the cronic rash. i was living in the north east of England then. I was getting very frustrated as the rash was getting worse. We then moved to another part of the country as my husband was in the forces. I was eventually diagnosed as having severe discoid lupus three years later.
The rash on my face felt like someone had poured a boiling hot kettle of water all over my face. I had no skin on my lips so i could not even kiss my husband or children for about 4 years when i had really bad flares, i also could not eat properly as my lips used to swell up. i also lost alot of my hair. so like some of you i went through all the sniddy remarks and name calling. I was once even asked if someone was stubbing cigarettes out on my face!!!!
After years of cronic pain and discomfort and a massive of amount of tablets, creams injections into scalp nothing at all seemed to work.
I was told by my dermotoligist here that there was another doctor in the next city whom specializes in Lupus would i like to go and see him. i jumped at the chance and explained if i had to go to another country for treatment i would pay for it myself as i was so poorly.
My new dermotoligist still put me on all the same medication i had been on for years, i think that is normal procedure for a new patient.
Anyway after two years he asked me if i would like to go on a clinical trail injection. I discussed it with him in great detail and agrred to it. That was a year and a half ago. This man has changed my life tremendously. my husband was injecting me once a week, my skin is fantastic now i am down to one injection fortnightly.
i now have only 2 little scars on my face and do NOT have to wear makeup for the first time in years. I still have a few bald patches on my head but they are not active at all.
So after all these years i am totally pain free on my face but have now been diagnosed with systemic lupus.
I hope my story is of some inspiration to all you suffering from discoid lupus.
I am trying to get both my dermotoligist to let me have a copy of my photos from years ago when it was bad down to this day and i will post them on here.
Please dont suffer like i did if your medication is not helping.
Many thanks for reading this story.
Hope there is not to many spelling mistakes!!!!!
Denise