Tuesday, 10 May 2016

Lupus Survey Results - A Picture of Us

Image: orange ribbon. Text: World Lupus Day 10th May
If you filled out the lupus survey, thank you very much.
The results are below - you may find you have to scroll side to side to see everything.
There are some issues with the reliability of the survey - there was only one male respondent, and since ten percent of lupies are men, that's a bit of an under-representation.  Apart from that it was only a sample of 99 people, which is a very small sample, and of course it was self-selected (people chose for themselves to fill it in), rather than a true random sample. Even with all that taken into account, I still think it gives us a good picture of ourselves:
We're of a wide variety of ages, and most of us had a significant time lapse between our first symptoms and our diagnosis.  For a quarter of us that time lapse was ten years or more.  (I'm sure it would be very interesting for someone to research at some time, just what happened in those ten years, and why so many diagnoses took so long.)
In the general population, about 1 in 68 children is diagnosed with an autistic spectrum disorder. Of the 70 lupie parents who responded to the ASD question, 12 had a child or children diagnosed with an ASD.  That is clearly well above the amount that would be expected. This fits with other studies which have indicated that children of mothers with lupus might have an increased risk of autism. Again, those studies are few and science is only at the very beginnings of understanding why this might be the case, but we have borne it out in our own little survey.

The survey looked at another pet issue of mine - people with invisible illnesses being criticised for using disabled parking spaces.  The vast majority of respondents didn't have disabled parking permits.  Of those who did, about half used their permit and never had any problems.  Of the other half, a small number were afraid to use their permits, and a significant number had received criticism.
On the question of the pain experienced by lupies - no-one claimed to be completely pain-free even on a good day.  For most people, pain on a good day ranged from 3 to 5 on a ten scale.  On a bad day, most lupies reported a pain scale from 8 to 10, with no-one having a pain level below four.
The vast majority of us are chronic liars, admitting on the survey that we do lie to family and friends and say we are "fine" when we most certainly are not.  (Only 11 respondents claimed that they did not do so.)
Most of us have gut symptoms.  About half of us have gut symptoms that are affected by gluten, lactose, or both.  A quarter have gut symptoms that aren't affected by either of those. Lactose came off as causing issues for far more people than gluten did, and the majority affected by gluten were also affected by lactose.
Brain fog (cognitive dysfunction) is a problem for all except one of us.  That one person, I salute you.  Most had relatively mild to moderate brain fog problems. About a third were had a more serious issue, regularly forgetting important things or being confused, or even at the point of wondering if they had dementia.
There were no surprises in the question of who diagnosed us.  The vast majority were diagnosed by a rheumatologist with a GP being the next most common doctor to do the diagnosis.
More than half of us took steroids and felt they had caused us to gain weight. About a quarter of us don't take steroids.  Eleven people took steroids but didn't notice an effect on their weight.
As for the impact on everyday life, more than half of us reported that lupus changed everything. Of the rest of us, most said it had a moderate to serious effect. None of us said there was no change.

Summary of responses

Are you female or male?


What is your age range?

Under 2033%
21 to 3099.1%
31 to 402727.3%
41 to 502626.3%
51 to 601919.2%
Over 601515.2%

How long was it between when you first had symptoms and when you were diagnosed?

I don't remember88.1%
less than 1 year1414.1%
1-2 years1414.1%
2-3 years1313.1%
4-5 years1313.1%
6 -7 years66.1%
8 - 9 years66.1%
10 years or more2525.3%

Do you have children diagnosed with Asperger's or another Autism Spectrum Disorder?

I don't have children.2828.6%
I have children, but don't have any diagnosed with an ASD.5859.2%
I have one or more children diagnosed with an ASD.1212.2%

Have you been criticised for using a disabled parking spot?

I don't have a disabled parking permit.8080.8%
I have a permit, but don't use it, because I don't want to be criticised.33%
I have a permit, but don't use it for other reasons.00%
I have a permit, and have been criticised for using it.77.1%
I have a permit and use it, and have never had a problem.99.1%

Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "good" day?


Using a scale of 1-10 (1 is no pain, 10 is the worst pain imaginable), what is your level of pain on a "bad" day?


Do you regularly lie to family and friends, and say you are OK or "fine", when you are in pain, fatigued, or suffering other symptoms?


Do you have gut symptoms that are made worse by gluten or lactose?

I have no gut symptoms.1515.2%
I have gut symptoms, but they are not affected by gluten or lactose.2727.3%
I have gut symptoms which are affected by both gluten and lactose.2727.3%
I have gut symptoms that are affected by gluten, but not lactose.88.1%
I have gut symptoms that are affected by lactose, but not gluten.2222.2%

Do you have "brain fog"?

I never get brain fog.11%
I sometimes forget small things.2626.3%
I regularly forget small things.2222.2%
I sometimes forget more important things, and find myself a little confused.2222.2%
I regularly forget more important things and find myself confused.1515.2%
I sometimes worry I might have dementia.1313.1%

Who diagnosed your lupus?

General Practitioner2323.2%
Another specialist99.1%

Have you found steroids (eg prednisone) have caused you to gain weight?

I don't take steroids.2727.3%
I take steroids, but haven't noticed an effect on my weight.1111.1%
I take steroids, and believe they have caused me to gain weight.5454.5%
I have steroids and believe they have made it harder for me to lose weight I already had.77.1%

How has lupus affected your day-to-day life?

No effect at all.00%
Little effect44%
Moderate effect2121.2%
Serious effect.1515.2%
Lupus has changed everything.5959.6%

Number of daily responses

January 10, 20166
January 11, 201628
January 12, 20163
January 14, 20164
February 21, 20162
March 7, 20163
March 8, 20162
March 14, 20161
March 17, 20163
March 31, 20161
April 3, 20161
April 5, 20161
April 6, 20166
April 7, 20162
April 10, 20161
April 11, 20161
April 12, 20161
April 16, 20162
April 17, 20162
April 22, 20162

1 comment:

  1. That's a very interesting survey ! Thank you to all the lupies who took part ! Claire


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