Older people with Thalassemia, what have you noticed about related illnesses?

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Offline dancam1

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Hello, Dan from Buffalo.  We all know about the research about Thal and what it does as far as the blood, spleen etc.  But what about later in life when the body starts to slow down and change.  For example, Diabetes can cause Retinopathy, Neuropathy, DDD (degenerative Disc Disease), DJD (joint disease), blindness, etc. 
      But what about Thal?  What do we really know about the interactions with other parts of our bodies that these mishapen blood cells and malformed WBC's will do in the long term.  For example, I have a pretty severe case of DDD.  For 2 years straight, I didn't have 2 MRI's that came out the same.  Finally I had to stop working.  Other problems for me have been extreme fatigue, neuropathy, and excessive bladder.  Are these problems releated to my spinal conditions or a result of Thal on the spine.  How much can we attribute to my specific condition (thal, asthma, syringomyelia, and DDD), and say other Thal sufferers that may have similar issues without the asthma or other factors. 
     What have others noticed change from when they were younger?  PLease post and get back.  Maybe we can get someone to look into side effects of Thal.
thank you
Dan

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kathy10

HI Dancam.
I'M close to 52yrs old and I had to give up work two years ago .I now do volunteer tutoring once a week only.MY blood tests result thal minor plus sicklec cells.
MY health seems to spiral downward from the age of thirty-eight .I then required a hyterectomy due to the fact that I had fibroids like a bunch of grapes in the uterus.Then I had tachycardia and I was getting tired more easily than before.Followed with confussion and anxiety at times, I found that sometimes I couldn't write report effeciently because I either forgot or I could not consentrate(by the way I was a nurse for 28yrs).
Because of my declining health I took more studies, that was when I was 41yrs old and it took three yrs to qualified as a welfare worker, so that I can get a different job. in which case  I did.I got a position as a social worker it lasted one year, again I was so sick with, hard to manage high blood pressure and high cholestrol and lots of aches and pain.My eyesite is not very good either
I also suffer from very bad depression .Really I'm ashame to state that I stay alive, because I love my four sons too much to inflict the pain of loosing a parent because of suicide.
I am currently on aprox. five different types medication daily.I have got an appointment with a heamathologist on the 18/04/2006.
I hope my writting makes sense.


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Offline jzd24

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Hi Kathy and Dan,
     Sorry that you both are having so many problems - I really sympathize with you. Having multiple, chronic health problems is really challenging and tiresome to deal with. I am so glad you sent the post obout older people with thalassemia. I will be 55 in May, and I have thalintermedia. I didn't start regular transfusions until 3 years ago. My health improved a lot as far as getting infections, and in some other ways.
     This year has been difficult at work. I am a teacher and have not missed as many days as I used to before transfusions, but when I come home, I am usually exteremly tired. I also have had terrible chronic pain in my knee, hip and back, really severe headaches, general pain, chronic sinus infections, nausea, insomnia, and difficulty concentrating at times. I am getting discouraged dealing with this pain everyday.
     I don't know what things are due to my thalassemia. I have worked hard as a teacher for 29 years, and lately I just feel drained and exhausted so much of the time. I have 5 more years until I can retire with maximum benefits, and I feel like I can't work that much longer!
     I have had most of these problems over the years, but they seem to get me more exhausted now. I seem to do ok until about February. Working part-time would be better for me if I could afford it. Anyway, I wish both of you the best of luck in dealing with your health. I hope other older thals respond to your post. I don't mean to bring people down; I guess I'm just having a bad few weeks.  Thanks for giving me a place to get my feelings out. It's hard when you work with people who are rarely ever sick.  Jean       

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Offline Andy Battaglia

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I think this is a huge issue that is confronting us as the thal population ages for the first time. It is basically uncharted territory and much research needs to be done into the health issues related to thalassemia in older thals.

We are currently running a poll about research priorties and one of the selections is Management of health issues in aging thals.  The poll can be found under the thal major category at
http://www.thalassemiapatientsandfriends.com/index.php?topic=144.0

If you haven't voted, please do. These results are not just for our own curiousity. There is a research group that has asked some of these questions about the research priorities for thalassemia and they will be kept abreast of the results of this poll. I encourage everyone to vote in this poll. And I also encourage all our older members, minor through major to tell us about what issues they are facing and what, if anything helps to deal with these problems.

Don't underestimate the power you can have through words to effect the nature of your own care. We reach a wide audience through this group, including many working in the organizations and in the medical profession. Please make sure your voice is heard.


Andy

All we are saying is give thals a chance.

 

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