General Chat

Hi all,


http://petitions.number10.gov.uk/sarcoidosisaware/ClgvTNADm5mzAgzhKmAFoRI


If anyone would like to sign this petition to raise awareness of sarcoidosis I would very much appreciate it. I was diagnosed in 1999 after many years of poor health. Its good to finally know whats wrong but was a pain to find not that much is known about it and that the main treatment is steroids. This can cause a bit of a problem as steroids in turn weaken bones and unfortunately some sarcoid 'sufferers' find it hard to take calcium.

There is so much more to say but if anyone wants more info please mail me or google!

love Theresa

Signed Theresa, my OH's late brother had this awful condition, more needs to be known about it.

Signed it Theresa.

Have only heard of it in the past few weeks, but know it is a very painful affliction.

Duly signed Theresa. Will pass the web address on to my children and other members of my family. Sorry I have not been in touch. Must make more of an effort, I promise. xx


As many of you know, I lost my first husband at the age of 35yrs to Sarcoidosis. I worry constantly that our children or Grandchildren could develop it in years to come. It is still not known if this terrible disease is hereditary.

Please please sign this petition even if you have never heard of Sarcoidosis.

Jenny xx

A little about Sarcoidosis.



What is sarcoidosis?
Sarcoidosis is a condition causing inflammation within the body. This inflammation causes tiny lumps to form, known as granuloma, at various sites within the body. Sarcoidosis most commonly affects the lungs and lymph glands in the chest area (pulmonary sarcoidosis). However, it can affect almost any part of the body including the eyes, skin, heart, liver, kidneys, salivary glands, muscles, nose, sinuses, brain and nerves. It is the presence of the granulomas formed in response to the inflammation that causes the symptoms in the various parts of the body.

What causes sarcoidosis?
The exact cause of sarcoidosis is not known. It seems likely that there is some genetic susceptibility to sarcoidosis as it can run in families. It has been suggested that an infection, or some environmental agent, may trigger sarcoidosis in someone who is genetically prone to it. So far, no specific infection or agent acting as this trigger has definitely been identified.

Who gets sarcoidosis?
Sarcoidosis is relatively rare and affects about 10 to 20 people per 100,0000 in the UK. Women are a little more likely to be diagnosed with sarcoidosis than men. It is most commonly first diagnosed between the ages of 20 to 40 years. However, sarcoidosis can affect younger or older people. Sarcoidosis seems to be more of a problem in some countries rather than others. It is most common in Sweden and Denmark. It also seems to be more common in Afro-Caribbeans than other ethnic groups.


Copied and pasted from Patient UK. For more information just 'Google'

Jenny xx

Thanks everyone.

Gentle nudge,

love T.x

Hi Theresa ,

My husband 44 yrs old is currently suffering from sarcoidosis , it spread rapidly starting with a cough , sore feet , shins knees , hips , ending with him being rushed to hospital unable to breath, he also on occassions lost his vision , thankfully his sight is back to normal , he's on long term steroids & now he needs to take a tablet to prevent oesteoporosis back at hospital this month, This was such a shock to all of us as he's never had a day off sick in his life he hadn't seen a DR for 10 yrs as he was so healthy, the steroids have made him like the b***** hulk, solid.. I think people should be made aware of the sympyoms
I have my doubts to it being genetic, but am looking forward to any outcome through their research. ,

luv Karen

~~~~ waves for Vods ,

Hi Jenny
Lovely to see you posting .

Karen xx

Hi Karen, nice to see you again. I think of you often. x


My 2yr old Grandaughter had a couple of days in hospital last November due to a really nasty chest infection. My son was asked by the Dr. if there was a history of chest problems in the family. My Son mentioned that his Dad had had sarcoidosis. The Dr. said that this fact should be kept on medical records for any other children or grandchildren my Husband had.

It is now written on all our children and Grandchildren's records..


Jenny x

Done:o)

jude:o)

HI Karen,

Sorry to hear about your hubby. When I first got the lung problems I thought I was going to die, it was really scary. The long and the short of it was that I was LUCKY my sister had TB the year before because of course this was what they thought I had!

I am lucky now because although my lungs have some fibrosis, I am used to it and it doesnt affect me in a big way. The tiredness NEVER goes away completely though and sometimes I find this very depressing. My GP here is a wonder and knows so much about Sarcoid but its more common in Ireland. 2 of my close neighbours have it and I know of many people with it locally. In the UK many GP's and nurses havent heard of it never mind know how to go about diagnosing it. I was sick on and off for at least 6 years before I got my diagnosis in the UK and I honestly believe that it was in a large part due to my sisters illness.

Anyway, Karen, the good thing is now that you know whats wrong; that was tbh my most scary part. Now its a case of trying to attain the best possible health for yours and your hubbys individual circumstances. In the early days I half wished that one of the possible diagnoses was right (Non-Hodkins Lymphoma) as at least something was known about that! (I know that statement is difficult for some people to understand unless they've 'been there'.) It was a strange learning curve.

Thanks to those who have signed the petition. I got the email through and whilst I now dont live in the UK I know that some people on these boards have been affected by Sarcoidosis. Awareness is the key, so many people have been incorrectly diagnosed with something else. (I was told initially I had MS.)

Take care,

love T.x

n.............

love T.x

N.

T.x

Nudge!

Please sign if you havent already!!

love t.x

I have just come across your petition.
I have Sarcoidosis, and so have both of my sons. I was diagnosed thirty years ago, after a biopsy on a removed nodule. My sons have just been diagnosed after ten and thirteen years respectively of suffering. My elder son has been attacked in his lungs, My younger son is being treated by Moorfields as it is attacking his eyes. I am really very fit and well.
Please re establish your petition! This terrible curse is so unknown, and with the right research I am sure that more help would become available.
I hope that this finds you in good health Joyce