What is your current age range? - Hughes Syndrome A...
What is your current age range?
Please select one:
At 80 years old, I am less than 1% of a disease that is 1% of the population!
I guess I'm an anomaly, and I do have a few speculations that might be of value to someone researching this illness.
You are not asking when our symptoms started or when we were diagnosed or how long it took us to get a diagnosis. My husband, on the other hand, is wondering how many medications everyone has to take compared to the 30+ (Pills not medications. lol) that I usually take.
I take over 45 pills a day, can anyone beat that ??
I am also the most expensive patient in my doctors practice because of all the meds that I take !!
You got me beat but I can beat the expensive part. My meds last year exceeded $200,000 because I had to have chemotherapy. I have Lymphoma due to the APS attacking the bone marrow. The chemo wasn't as bad as I thought it would be. But I bet you are worth every penny. 
Maybe I should explain why I suggested this poll –
I thought it would be interesting to see members’ age range percentages at this present time in history.
I hoped that the numbers reflecting the more mature members would act as reassurance to those younger newly diagnosed members, who are possibly apprehensive as to what an APS diagnosis indicates for their future. An early diagnosis and relevant preventative treatment must surely be to their advantage.
I did not ask for other information as suggested, as I wanted to keep it simple and easy to possibly repeat for comparison in the not too distant future. (The pill numbers are amazing.)
If the ‘age of enlightenment’ towards APS for members of the medical profession proves as effective as hoped, a future repeat poll should show signs of changes taking place.
For example the teenagers with repeated migraines and young women experiencing miscarriages will hopefully be tested, diagnosed, educated and relevant treatment commenced, so the numbers in these age ranges should show an increase in the future.
Whilst there may not be a major change in the middle ranges, where diagnosis has already been made and treatment started, hopefully these people will, as a result, avoid major problems, live longer and subsequently boost the numbers in the older groups.
I experienced teenage migraines in the 1950s (diagnosis ‘exam pressure’), I went on to have several miscarriages, DVTs and PE. It was not until 1983 when my caring GP – to whom I will be forever grateful – insisted on starting me on life-long wafarin. At about this time I was advised by another doctor that I “would not live much beyond 70.” It sounded a long way off then – but I am now 69 and very determined to prove him wrong. I was not actually diagnosed as APS until 2001 following a heart attack at work, and I have sometimes wondered if an earlier diagnosis would have improved my life – I think it possibly would have – and I hope that this will prove true for those diagnosed in the future.
My thanks to those who are participating.
I think early diagnosis will re-leave a lot of anxiety, because with the strange range of symptoms, I was treated as neurotic. It took 50 years to be diagnosed. Many Doctors still do not know about Hughes or APS. I was eventually lucky when I surgeon who was doing a biopsy for Temporal Artritus, mentioned it. He had worked on APS as a student. When I looked it up and saw the rash and range of symptoms it was like looking at my life medical history. My optician knew nothing about it, and it affects my eyes, I told him to go and look it up.
thanks for doing this poll very interesting and as you said reassuring for the younger newer diagnosed amongst us kx
It would be interesting to be able to see what age members were when they were diagnosed and what there ages are today! Can this be edited to allow this or a new poll raised?
I will add it as a new poll as this one is specific so will send one out next week
Well I was diagnosed at 18 and am now 31.... I would be interested to know this too Gadgets! 
xxx
I would guess that Hughes / APS was even less likely to be diagnosed in the past, so this may account for the small numbers of older people who have a diagnosis in this poll. Also, less older people use the internet than say people in their 40's or younger.
Hope this helps .... During my time working as a practice nurse in a GP practice I was given the task of doing audits relating to aspects of the nurse-run clinics etc. I soon learnt that unless you were going to do a full questionnaire, which took considerable time to compile and complete, let alone calculate and summarise later, it was easier to keep it simple and ask just one question at a time. Then, at a later date you ask the same question to the same people again and attempt to analyse any changes.
There are several questions that come to mind apart from current age - for example age of first symptoms onset - length of time from onset to correct diagnosis - what was the event that resulted in diagnosis, etc.
As norris so rightly says, there are so many permutations of symptoms with APS that it is not necessarily an easy condition to identify - never mind analyse. We can only compare ‘now’ with ‘later’ figures to see if progress/improvement is being made or not, and ideally the same people answer each time.
I agree with purple, except that I would say that with the increase in women working, it’s more likely to be the over 60s who are computer-shy. There is also the fact that APS does not mean you are immune to other life shortening conditions.
I’m sorry about this folks but Proff. Hunt started me on Hydroxychloroquine two months ago and my brain is re-emerging from a four year fog - I’m beginning to feel human again!! If only .......
