| Scleroderma | # respondents | Notes |
|---|---|---|
| Limited | 10 | Two respondents have both diffuse and myositis (overlap) |
| Diffuse | 9 | |
| Other (please state) | ||
| CREST | 1 | |
| Raynard’s | 1 | |
| Sjogren’s | 1 | |
| Total | 22 |
45 % of the respondents indicated they had been diagnosed with limited systemic sclerosis and 41% gave a response as having the diffuse form of the disease.
Two respondents noted overlap condition of myositis and there was a single response for each of CREST, Raynards and Sjogrens.
Many of the respondents were not sure of their exact diagnosis as either it had not been established with them by their consultant or they had been given conflicting diagnoses by one or other of their doctors whether the doctor was their primary care physician or one of the consultants/specialists. As one respondent wrote:
- Doctors are not really sure whether I am one or the other or a mixture of both
| Year | '88 | '91 | '94 | '95 | '97 | '02 | '04 | '05 | '06 | '07 | '08 | '09 | '10 | '11 |
|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
| # | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 2 | 1 | 2 | 3 | 2 | 4 | 1 |
Total # of respondents diagnosed = 22
Diagnosis had been made anywhere from June 1988 to 2011 although comments were made that some respondents had had the disease for considerably longer with a lack of diagnosis and only their symptoms being treated.
| Admissions | 0 | 1 | 4 | 10 | 12 | More than 12 |
|---|---|---|---|---|---|---|
| # | 4 | 2 | 1 | 1 | 2 | 1 |
Comments
- A number of admissions to hospital before diagnosis, have no idea how many will have been related to scleroderma. A number I would think.
- Maybe more than 12 times in the first 4-5 years
- 12 maybe?
- -4 time in past few years
- Never – but very close to it a number of times
Hospital admissions had been a frequent occurrence for some respondents, both before and after formal diagnosis. Three respondents had had at least 12 admissions but at the date of the survey, the majority of patients had only 1 or no admissions.