Risk Factors and How They are Handled
Are you at higher risk of developing any illnesses and/or conditions due to any of your current disabilities?
Do these seem to be well-known?
Do you get any professional help in terms of things that can be done? Things like prevention tips, extra screening, symptoms to keep an eye out for, etc.
I'm not really happy with how these things are handled. I think a big part of the problem is care isn't as comprehensive and cohesive here as it could be. Doctors do very little communicating with each other. My specialists deal with their areas and provide a summary but they don't really mention things that others should look for.
I know that Celiac disease, autoimmune diseases and cardiac problems are things that I am at a higher risk for, and I know this from reading the literature. For some there's fairly limited data and the increase risk isn't even always specified.
Some things I was never informed of and only became aware when I finally got it diagnosed, like the correlation between asthma and nasal polyps. It's frustrating and I wish there was a better system in place for this.
@AffyAvo
Do you think this may be due to a lack of training or knowledge? I wonder if doctors are intentionally not communicating this or if they even know it. I don't have a disability, but I have noticed in my own life that contraindications are rarely mentioned.
@incompl I think often this is known by specialists, but it's not passed on to other doctors that I see. Sometimes I will bring things up and am more likely to be able to get certain tests done because of it, but that responsibility falls on me.
Well I have epilepsy and have been on the same medication for about 13 years. They never mentioned any side effects. In early August, I broke my ankle and then my neurologist decided to tell me that 1 of my meds side effects is breaking down bone density over time. She said I'm too young to break my ankle so easily by just falling, but I was intoxicated and I can't say how I fell exactly. So I went for a bone density scan and now I'm on a Calcium supplement. I had to have surgery on my ankle too. I have been walking on one foot for 2 mos. It is not fun. I think we should look at all the side effects and risk factors of our medication.
@TransAm85 I was thinking about just the inherent risk factors due to our bodies, but yes, there's the issues with medications too. I find that information can be found more easily though - product monographs, asking a pharmacist, speaking with the drug company, etc. Prescribing doctors in general should do a better job about sharing the risks of medications though.
@TransAm85 haa your medication been helping to keep your seizures controlled? I'm on generic Keppra but I still had my worst seizure ever yesterday. And, since I live in a state where it's still illrgai, I can't take marijuana for it, even though I KNOW that helps.
@TorFlanders How old are you? I have tried so many medications for my seizures when I was first diagnosed in '00 til '05 when they told me I was a candidate for surgery. I was 19 and had part of my left temporal lobe removed. It helped reduce the grand mal seizures drastically, but my short term memory, concentration, and attention span is horrible. Like I have ADHD now. I agree w/you as well regarding the cannibis. I am 33 now though, so there is not many more options for me, as I've already had surgery, did non FDA approved drug testing, taken different meds over the years, as well as abusing my body w/smoking and drinking. Don't be stupid like me. They have so many new options for people w/epilepsy. Get all the help you can get. If they can do a surgery, I feel it is worth it. Good luck!
@AffyAvo There is still much being learned about my disability as it was first formally recognized in the DSM in 1994. ( High Functioning autism/ Aspergers Syndrome.) However, I do have a higher risk of severe depression with my disability, in which I do have, but it is combatted by medication and support services I have in the area in which I live. I wish there were more widespread resources for adults with autism ( which I am) and females ( Which I am as well) with autism no matter what form they have.
Weve come a long way, but theres still more to be done.
