Advice for older people over 60 who have AS and not had symptoms before this started.
Good afternoon
I was only diagnosed last year at 62.
I had no symptoms to say I had this when I was younger as most people do.
I have Ankylosing spondylitis
I was only diagnosed last year at 62.
I had no symptoms to say I had this when I was younger as most people do.
I have a considerable amount of pain and as it's invisible condition people can't understand that.
I also think it's a misconception that says everyone has this when they are younger and something triggers it.
Yes, something did trigger this and I was told by the rheumatologist that it was covid vaccine.
In the Uk, hardly any support or understanding apart from doing exercises which help some people but my body is not 20 or 40 it’s very different to how I was then.
Why isn't there a podcast or information about people who are older having this without having any symptoms when younger, or am I a rare case.?
Every time I see websites with AS it's always young people and how they had it when younger but took years to discover.
In the Uk medical professionals can't even spell it, never mind understanding it.
People need to be aware that it can happen to anyone and any age, not putting covers on their website etc of people jumping around.
Put stories of older people and how they manage and how it effects mental and emotional health as well.
Every time I see websites with AS it's always young people and how they had it when younger but took years to discover.
Yes, exercise helps, but my body is not the same as a teenager, twenty-year-old etc, it's 63.
In the Uk medical professionals can't even spell it, never mind understanding it.
People need to be aware that it can happen to anyone and any age, not putting covers on their website etc of people jumping around.
Put stories of older people and how they manage and how it effects mental and emotional health as well.
Thank you
Jan
- You raise an important point about the lack of representation and awareness of AS in older individuals. AS can indeed affect people of various ages, including older adults. While it is more commonly associated with younger individuals, it's crucial to recognize that the condition can develop or be diagnosed at any age.
The focus on younger individuals in AS awareness materials may be due to a combination of factors, including the fact that AS often begins in early adulthood, and younger patients may be more active in seeking out information and sharing their experiences online. However, medical professionals and organizations need to recognize the diversity of individuals affected by AS and provide information that is relevant to people of all ages.
To address this issue, it's essential to advocate for better representation and education about AS in older populations. You can consider reaching out to AS organizations, support groups, or healthcare professionals specializing in AS to express your concerns and suggest the inclusion of stories and resources that reflect the experiences of older individuals with the condition just as you have done here on our site.
Sharing your own story and experiences as an elder person living with AS can help raise awareness and provide support to others in a similar situation. Online forums, social media groups, or local support groups can be platforms where you can share insights, connect with others, and promote understanding of AS in older adults.
And, by actively seeking representation and sharing your experiences, you can raise awareness, promote inclusivity, and support others facing similar challenges with AS later in life.
Hoping you take the time to write about your experience - with warm regard. Rebecca (community moderator)
It's very disheartening to hear no one is interested in getting together in your area to start an AS support group. I did look on the Versus Arthritis website and saw that there is a link to help you become more involved in events around the UK. May you could join an event to spread awareness. Click Get Involved at the top middle and it takes you to a page with several links. Also, here is a link that could help inform you about starting a support group https://www.thewellproject.org/hiv-information/starting-support-group And, podcasts are a great way to get involved as well. Here is a link to a great podcast to listen to https://www.spondypodcast.com/ to get some ideas or you could suggest to them a podcast on those diagnosed in elder years. Here is a link to several podcasts. https://player.fm/podcasts/Ankylosing-Spondylitis Wishing you the best and hoping you find just the right support you need. Rebecca (community moderator) hi Rebecca
Thank you for the links, I rang the Versus Arthritis and also looked in my area but didn’t have anything going, out of the area there is a group, it’s not an AS group but arthritis group so will give that ago it’s once a month.
The support group will be good to do but how to get people where from that is the problem.
The AS podcasts were so very informative and useful thank you so much for that.
Lots of helpful information that I didn’t know here.
Thank you so much Rebecca
Rebecca C
Hi sweet
Wanted to say and see how you are doing this weekend. I can agree not everyone is the same on how this disease affects them. One can be doing so many things our there, but another can be in bed having a hard time getting up. Like you mentioned it affects mental and emotional state in so many ways.
How have you been doing ? I totally understand where you are coming from and want to hear more from other that are older. We have many members on here from all ages. I think you are doing amazing on sharing what you are going through with this disease as you are helping so many others see what it is to go through at any age.
Sending you the deepest warmest hugs,
Nicky (Team Member)Hi
I think they are trying to put everything in private. Which is kind of expensive and can't afford. Especially if you are a large family. It's a bit of mess here in Quebec. I am not sure why my doctor left the secretary didn't say nothing. I was more upset that they didn't give me a warning before. I last saw him during covid. In the mean time, I guess till i find a family doctor hopefully it won't take that long as they say, I will have to go to a walk in clinic. I am also waiting to see my rheumatologist at the end of the month to see maybe he can refer me to someone.
How have you been doing this week?
Nicky (Team Member)hi Nicky I am so sorry it’s ridiculous, that is what they would like to do that here, our NHS has been going since the 1950s and this government want to make people pay for medical care, they are chipping away at it slowly and not giving pay rises to nurses and so many people are on the waiting list, nurses and doctors are leaving the uk and working in America and Australia better pay and lifestyle.
He should have told you and not left you without saying anything.
Actually here a walking clinic is the only way now as you can’t see a doc, you can ring the receptionist but even speaking to a Gp it takes weeks.
I hope your rheumatologist can help let me know.
This week not great,I have tinnitus and it’s driving me mad and got worse this last week.
I wrote down all the side effects from the last infusion and don’t know if this one of them as this happened third week.
I see rheumatologist on Thursday another waste of time.
Take care dear Nicky
Sending lots of hugs 🤗 🤗
Hello and thank you for your message, I have read your interesting posts, I wouldn't say I was a good writer as I just write about the medical profession in the uk that seems to have no idea of what they are doing this past two years.
I have had missed appointments,phone calls not happening when they said, and so many other things.
Yes I can join you if you would like?
Let me know how I can help.
Regards
Jan
Thank you for the comment. We can always use great senior writers. (or any great writers) Perhaps you will join us? I am 66, and I think I do a pretty good job covering my live. But since I have started school once again, I can use some help. I look forward to your contributions.
