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  1. #1
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    Default Hi

    Hi everyone!

    I am Fraz, I am from Pakistan but currently I am in Sweden for my Masters Degree.
    I am not a patient of SLE nor I am a student of Medicine but my mother is a patient of SLE
    although she is being treated with steroids and some other medicine in Pakistan but there seems to be no
    improvement OR cure of this disease other than controlled treatment through steroids.

    Anyway I am just curious why there is no cure to this disease and thats why I found my way to this forum.

    I hope I will find some information.

    Fraz

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    Hello Fraz and welcome to WHL -
    I am sorry to hear of your mothers struggles with this disease....There is no cure for lupus - we can only take medications to keep the disease under control and to treat our symptoms. Sadly, most of the medications are toxic and there has been no new approved medication for lupus in 52 years...
    There is no cure for MOST of the autoimmune diseases (Crohns, rheumatoid arthritis, MS, myasthenia gravis, Sjogrens Syndrome, etc etc). Lupus manifests itself in many different ways - and differently in each person that has it. In addition, lupus is known to cause flares (increase in symptoms) and remissions. The combination of these issues makes it very difficult to do studies on lupus - as it is different in everyone, and symptoms and/or disease activity waxes and wanes. Sometimes it takes trial and error with different meds and treatments before improvement can be seen. Hopefully your Moms doctors will find the right combination of meds that keep her disease activity to a minimum with the lowest amount of meds possible.
    You can find a TON of info on everthing about this disease on the "sticky" pages at the top of the forum marked "Lauris Lounge"
    Good luck and I hope your Mom finds some relief soon
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    Thanks for you reply and kind words I dearly appreciate it.

    I feel that this disease has not received as much attention as it should have maybe due to the complexities/ambiguities involve in its symptoms and diagnosis.
    Anyway I always strongly believed that there is nothing impossible .... and hopefully some cure will be found.

    I never liked the field of medicine for myself during the earlier phase of my education .... I am in Computer Science but now I wish I had more interest in medicine

    Anyway I think its never too late to learn things if the motivation is there.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hello and Welcome Franz;
    Your mother is very lucky to have you and I admire you for wanting to learn about this disease on your mother's behalf. Lauri has given you excellent information. I just wanted to add that, another reason why there is no cure for these auto-immune disorders is because there is no known cause for the diseases.
    Doctor's have pinpointed several issues that may be connected to the activation of these diseases, but nothing is concrete and nothing is known with any certainty. Until there is a verifiable known cause that can be singled out, there will be no known cure.
    So, you are absolutely right; treatment is aimed at managing the symptoms and reducing the effects of flare-ups. That is the best that we can hope for right now. There are several medications in the testing phase that claim that they will eliminate many of the symptoms of Lupus, that has not happened yet and, since everyone's Lupus is different, they may only work on a certain population of Lupus patients.
    You are doing the right thing by learning as much as you can about this disease so that you can assist your mother in managing her Lupus. We are here to help you help her in any way that we can.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

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    Hi Saysuise!

    Thanks for you reply.

    Well I find my mother very unlucky as she did not had a very happy life due to all the problems we had and then this disease showed up.
    In fact my mother is a patient of this disease for more than 6 years now if I remember correctly. Initially we were unable to get the
    right doctors as many doctors were unable to daignose it maybe due to ambiguities in symptopms but finally we find the right doctor and
    so far she has been treating my mother. The thing is that after so many years there has been no improvement as sometimes medicine are
    good enough to control it but later the effects show up again and she enhances/inctreases the dosage accordingly and this pattern has
    been going on throughout all these years. The doctor is well qualified and she also keeps her upto date by attending different
    events regarding this disease in US and other countries.

    I understand (now even better) that this disease is very hard and complex to deal with but I still feel and hope that some cure will
    be found soon. "Inshallah"

    I will search these forums but if you know anything particular then please let me know where I can find information / research done on the
    causes and methods involve for diagnosis.

    Its really amazing and satisfying to receive such prompt response on this forum, you are really putting up a great effort and I wish you
    success and happiness in life.

    Thanks once again.

    Fraz

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    Hi Fraz,

    I think it's wonderful you want to learn as much you can and support your mom. I think, in addition to the already mention reasons there isn't a cure yet, there is also the fact that this disease, for the most part, is still relatively unknown to the general population and therefore underfunded for research. Also, at least in the US, the costs and times associated with developing new drug technologies can be staggering and with such a huge spectrum of symptoms, hard to assess the effectiveness of. I hope God hears your wish and a cure does come soon.

    Sandy
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Hi Sandy,

    Thanks for your reply and input ...
    At least we can raise a voice or contribute in in anyway possible to get better attention, and I admire you all for
    your time and concern.

    Regards

    Fraz

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