Hello all, I was very recently diagno... - Hughes Syndrome A...
Hello all, I was very recently diagnosed with Hughes's. Can anyone advise whether insurance companies class this as a critical illness? Ta:)
Hi Davey - this is the paradox of Hughes/APS - no, it is not listed as a crtical illness rather a chronic or long-term one. Fair enough, but then the insurance companies have decided they will not offer any cover for life insurance/assurance because we are too much of the unknown for them and they're not willing to take the risk. Great. Thankfully, the HSF charity has finally found a company which has been able to get policies for APS patients, but it is on a case by case basis so there is no guarantee. Please have a look at our website: hughes-syndrome.org/self-he... under the last heading of Health Insurance for more details.
Thanks for your reply Kate. I have mortgage protection with critical illness cover already, but they don't yet know of my diagnosis.
They should still honour that - I had mortgage cover and critical illness cover when I was first diagnosed. They still allow the critical illness for the amount I initially took out, but you will no longer be able to get critical illness policies in the future. I would ring and make sure if I was you, as you don't want to be paying into a policy that won't pay out. I've moved house seven times since I took the first mortgage protection out ten years ago, and have only got life insurance this year through NLP - been refused all the other times. Good luck!
Hello Kate, thanks again for your advice. I will speak to the insurance provider this week. Best wishes, DaveyG.
Hello again Kate, I am a little confused by your last reply!
Are you saying that your insurance company didn't pay your claim under your existing critical illness cover when you were first diagnosed but you have maintained your policy at the premiums that were set pre-diagnosis ?
Are you also suggesting that if I left my current insurer even without successfully claiming, then I couldn't obtain CIC in the future from any companies, or is that only if had made a successful claim ?
Sorry, I didn't want to turn this into an insurance q&a ! Thanks and I hope this makes sense 
Hi again Davey
Sorry for any confusion!
I have never claimed on any policy I had pre diagnosis, but those policies are still in place and are still valid - even if I have a stroke or heart attack. I did tell the insurers of my diagnosis and I am now not able to take out any new policies. Critical illness cover is simply not an option.
If you move house and have a mortgage it used to be impossible to get any mortgage cover - not good if you have loved ones to leave behind in a mess. However, NLP managed to get me decreasing mortgage cover for my latest move which is a major breakthrough and a relief for the family I would leave behind.
I'm not sure of your situation and if you have had a clotting event which would be covered by your CIC? Normally the policies cover cancer, stroke, heart attack etc. if you have, then do make a claim as it's unlikely you will get cover again.
Hope that's a bit clearer - apologies for the earlier reply, written in haste. If you want to talk about it please ring me at the charity 0207 188 8217.
Hello Kate, thanks again for your prompt response. I may give you a call just to clarify a few things. Thanks !
No problem - Friday afternoon would be best as I'm in a meeting in the morning, if that's ok with you?
In the US my Rheumatologist bills under Vasculitis....code.....but insurance also pays for Lab tests and there are
several related to APS that she monitors every 90 days....I would also believe that APS is considered a chronic
Autoimmune Disorder.....and my MD says once you have one AD you are prone to others....
You cannot just think of APS aka Hughes Disorder as a discrete illness.....its more complicated
Thanks Luisa, I will be sure to keep to my appointments at the hospital for future blood tests and speak to my Consultant about related conditions. This is a whole new world to me and I have a great deal to learn about APS. Thanks again.
I was recently diagnosed with Hughes' about three months ago. I had different neurological symptoms and constant headaches. I also developed epilectic waves on my EEG. Basically, had to leave my job, Brain fog is a pain as well and I had to stop driving. My disability insurance from my work place deals with my condition on a symptoms' basis. I have been lucky to never have had a stroke or thrombosis, however, I was developing more and more neurological, cognitive and other issues that stops me from having a normal energetic life like I use to have. My neurologist discovered the Leiden V factor gene mutation (dysfunctional blood clotting mutation) and subsequently found APS. I was lucky I had a good specialist. I have finally had my long term disability but it took a lot of work. One word of advice, document everything that has to do with your condition. Keep copies of medical tests and consultations, keep a extensive file of your insurance paper work, as well as phone calls, dates, times, who you spoke with and what was said. (For me this was an important one because of the brain fog and short term memory issues). I live in Canada, but I assume people all over have issues surrounding their insurance because this condition is not very well known. Good luck to you
Hello danluc, thanks very much for your post and kind words of advice. I am sorry to hear of your symptoms and experiences with your job and your driving and I am glad your persistence paid off with your disability. I had a pulmonary embolism and the subsequent tests diagnosed the APS. Luckily I have recovered from the PE and after 12 weeks off to recuperate I returned to work. I am maintaining a file at home related to my condition and I'm trying to understand all of the possible implications for my health in the future. Best wishes, Davey.
