Author Topic: Is there hope?  (Read 14510 times)

warmwaters

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Re: Is there hope?
« Reply #15 on: February 07, 2011, 04:44:47 PM »
Is there hope?

For a cure in the short term (next 5 years?) - I doubt it. Over a longer period, I have hope for either treatments that help relieve symptoms, or help address the underlying causes. But we are so early in on the research - we don't know what the triggering mechanism(s) are, we don't know why there is such a variety of symptomology, we don't know what the system and chemical mechanisms are (and so on). Each of these are important areas for research, and there's a need to get this research funded.

There are some real challenges with that - while many of the autoimmune diseases cause people to have a dramatically reduced quality of life, they are may not be seen as important or as urgent in priority as life-threating diseases such as cancer. (Note: I know autoimmune problems can be life threating, I'm talking about perception by others here). So we need to get political and make the case for why the research should be funded, and a priority.

Is there hope?
Ok, you characterized some folks as downers - we do have a lot of people on this board dealing with constant chronic pain. Which can make things look a bit gloomy. But that's one of the things that we cherish here, that it's a safe place to talk when you're having a bad time.

Is there hope?
To have a slow onset of the disease, with mimimal symptoms? Yes. If it's caught early, and you get treatment, it may be that you will not have any serious problems for a very long time (I hope NEVER!!).

Is there hope?
Every single day of my life I choose to hope that today will be a decent day. There is a weird duality for me about this disease - I have to be brutally realistic about what my health is, and what I have to do to get through this, and every day I get up, do the best I can, and look for a way to improve the limited abilities I've got.

So for me there's always hope, though it's not how I would have defined it five years ago. But I choose to hope. I am modelling myself on some people I've met here, and out in the blogosphere who decide to be as happy as they can, to connect with others as well as they can, and just try to keep living.

So :-) many answers to your questions. I hope the very best for you, as well.
Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
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CAT1962

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Re: Is there hope?
« Reply #16 on: February 07, 2011, 05:02:14 PM »
One and Only: have you had the lip BX done? I have only heard horrible stories. Also, the clinic here will only biopsy, no swabbing.  :-\

DragonflyC

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Re: Is there hope?
« Reply #17 on: February 07, 2011, 06:22:13 PM »
Cat192, I'm not 100% sure, but this is what I think OneandOnly means:

1. A lip biopsy isn't necessary for DNA testing; that only requires a swab.  The DNA testing would be for research into a cure, not necessarily diagnostic purposes at this point.

and

2. A lip biopsy shouldn't be necessary with symptoms and SS-B antibodies, which are specific to Sjogren's.  There isn't really a need for something as invasive as a biopsy (which, as you noted, can go wrong) if the blood work points in the direction of Sjogren's. 

shortstuff

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Re: Is there hope?
« Reply #18 on: February 07, 2011, 06:31:58 PM »
Dragonfly, I love you.  You always make me feel more optimistic. I'm not giving up hope.  Yet.  But I definitely think we need more awareness and money.  And I'm really sick of people saying stupid sh** like, "At least you don't have cancer!"  Thanks for that.  Very helpful.

irish

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Re: Is there hope?
« Reply #19 on: February 07, 2011, 08:49:52 PM »
I think that given the fact that Sjogrens was listed in my nursing disease book back in the early 60's and hardly talked about
until the last 5 years--as in 2005--that we will be having some new treatments coming down the pike.

I had known about the disease most of my adult life and never even had a clue that it was affecting me. Why?? Because all that was ever mentioned in the medical books for those many years was the dryness. I know a gal in town who was treated at the Mayo clinic for about 20 years or more for rheumatoid arthritis. In the past few years she found out that she was misdiagnosed and doesn't have RA-she has Sjogrens.

Science has solved the issues of many of the infectious diseases and now they are just getting started on the autoimmune. When I was in nurses training many of the people with autoimmune diseases died very soon. Now people are living longer after diagnosis and some are able to work.  Yes, they are not always comfortable all the time, but they are not dead. That in itself is a medical advance. Medicine has learned how to do some damage control with these diseases and they will continue to develop more ways to make life easier.

I don't think we are being downers either, we are just being realistic. The docs will find out more in the days to come. It may surprise you that some of the answers will come from research on other diseases that will cross over to the autoimmune disease. Cancer and allergy research provide a lot of knowledge that relates to the autoimmune system.

One of these days something will develop and life will be better, not for me but for my kids or grandchildren. From what I have read the recent interest in sjogrens is teaching us a lot about autoimmune diseases in general. I have even read that it is felt that sjogrens may be the beginning of all the autoimmune diseases.

It doesn't help to be angry about the situation as this is life and life holds no promises about anything. It is what it is. Irish

season

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Re: Is there hope?
« Reply #20 on: February 07, 2011, 09:17:00 PM »
I can only hope.

We all battle this every day and some of us are sicker than others, I can tell from reading their post. I sympathize with those that are hurting because I suffer too. I do hope there will be more to offer those with AI in the near future and I HOPE it is in the near future.

Someone correct me if I'm wrong-I heard on the news a few months back that someone with AIDS was completely cured and from listening to all the news reports from several years back, they reported there would never be a cure for AIDS.

I hope ........

eyeamdry

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Re: Is there hope?
« Reply #21 on: February 07, 2011, 10:48:34 PM »
Liz, I don't think I've ever disagreed with anyone as much as I do with you and your post here.  If I was brand new, I would cringe and probably go tuck the covers over my head and never come out.

I've only known I have SJS for four years or so, but likely many more years before diagnosis.  I don't think one thing you posted is the truth as I see it.  I realize that you are entitled to your own opinions.  But, death surely?  I had cancer diagnosis 6 months after my SJS diagnosis and I didn't even feel as dastardly with that diagnosis.  Am I the only one?

harrigan

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Re: Is there hope?
« Reply #22 on: February 08, 2011, 12:21:33 AM »
No Lucy  - you are not the only one!  I think you're spot on when you say that newly diagnosed people would be scared and depressed at reading that death was all there was to look forward to.

Realistically, we have to adjust our exectations and plans every day to how we feel, but if we always use our absolute bottom line, we will never feel or have hope.

Last yearI was diagnosed with RA.  In the space of 10 months I have tried 4 drugs and last week sarted anti-TNF treatment alongside MTX.  I am vey hopeful that this will slow the disease progress down.  I don't know why RA seems to get all the attention and range of treatments, but as time goes on, I expect these treatments will also develop and be used for other AI diseases too.

To anyone newly diagnosed, or struggling with a new aspect of their disease, I would say to give yourself time to accept what you have to, but still expect to lead as full a life as is possible.  I know I won't climb ay more mountains, but I intend walking along a lot more shores ad the view is still good from where I am.  XX Ailsa
Female, 54
Diagnosed with Sjogrens March 09; Rheumatoid Arthritis February 2010
Meds: abatacept, Methotrexate injections , Folic Acid, Amitriptyline, Ozepramole, Tramacet, Glandosane & Viscotears.

Meld256

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Re: Is there hope?
« Reply #23 on: February 08, 2011, 12:43:45 AM »
balor123,

Seems like you started an interesting thread!  ;)

As you can see, there are many different answers depending on what situation we are all in. Such as it is here, and I think it's great we have such diversity and everyone can feel comfortable giving their own opinion. That's why this forum is so wonderful.

I think warmwaters, irish and others had some good responses. For myself, I would only add:
There is always hope. I see you are a young man, and the thought of always having this could be overwhelming to me if I were much younger. Who's to say what medical breakthrough may happen in 5, or 10 or 20 years? I don't know. You may see a cure in your lifetime.

I certainly don't mean to sound negative in any way, but for me, personally, I am working toward enjoying my life as well as I can and trying to keep my symptoms at bay. I honestly don't have the energy to check all the research and keep up with it; that may sound lame but that's all I can do.

However, you may be a great person to push toward research. You may be someone who gets people in medical communities more interested and raises awareness. If so, more power to you and I bless you in those efforts!

Take care and keep posting your thoughts, ok? We always need to keep hope alive!
Melinda

DragonflyC

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Re: Is there hope?
« Reply #24 on: February 08, 2011, 04:02:26 AM »
I agree with Irish that the answers may come from research into something other than SJS, maybe something unrelated altogether or another AI condition. 

I'm especially hopeful about the Autoimmunity Centers for Excellence that are starting to pop up mostly at university hospitals (e.g., Yale, Duke, Stanford) to allow doctors from different specialties to work together.  I think looking at why our immune systems are misfiring rather than at diabetes, Sjogren's, lupus, etc. has real promise.

P.S. Shortstuff, Thanks!  Sending love back at you!

gurs

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Re: Is there hope?
« Reply #25 on: February 08, 2011, 04:36:58 AM »
Yeah, maybe they would find that Sjogrens is very serious...seem more Sjogrens having alot of neuro (CNS) issues just like MS..alot of Lupus people dont have this? My doc
said Sjogrens just as bad as SLE, which I can concur. I have both...lovely!!!

I guess we can never give up hope, but I dont forsee any major Sjogrens treatments in my lifetime.

We have to try the RA/SLE meds I guess.....

Gursie
52 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, sinus/dental issues. selective immune def/low t-cells.
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LizPetillo

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Re: Is there hope?
« Reply #26 on: February 08, 2011, 04:45:49 AM »
And I'm really sick of people saying stupid sh** like, "At least you don't have cancer!" 
Amen to that!
"you don't look sick"
"at least you don't have cancer"
"you are exaggerating .. you aren't THAT sick"
"you aren't dying"

... etc etc etc

Joe S.

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Re: Is there hope?
« Reply #27 on: February 08, 2011, 06:49:42 AM »
Back in the mid 80's when I had my first encounter with AI diseases, AIDS was the main topic of discussion. Until the Researchers, Doctors, Lawyers and Politicians started getting AIDS, no one did much for the patients. Most were told to die in their hospital beds. A few wanted to die a home. Their friends and families started to look for alternatives to modern medicine, and they started to live longer. They networked via email and support groups like this and and people started to find what worked and more people got help.

The were stories of cures. The doctors that came up with them lost their license to practice medicine. They ended up going to other countries and opening up clinics to provide the cures for the right price. Some of the processes were simple some were complex and dangerous. The thing to remember is that cures were found but were not made available in the US. In the US it is now a managed death with expensive drugs to treat the symptoms.

When I first got Fibromyalgia in the 80's, my neuro told me that it was a disease whose medical history and symptoms list dates back to at least 1000 AD. He did not have a name to call it at that time because the world health organization was in the process of renaming it. No good solutions were available but people were starting to live longer with alternative rather than modern medical treatment. He suggested that I study herbs, Vitamins, Minerals and other non-traditional things to find a way to manage it.

I brought this information back to the chronic pain support group. The nurses that started the group that had fibro said they did not believe it and modern medicine would provide the solution. They died form modern medicine (3) and medical mistakes (1). The side effects of the medicines are what killed them.

The auto immune diseases have been know about for centuries. It has been left to the patient to find what works in most cases.

 Yes there is hope. Hope depends on you taking sovereignty back of over your health.
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ohiolady

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Re: Is there hope?
« Reply #28 on: February 08, 2011, 07:29:06 AM »
I would just like to say there is hope!!!!!!!!!!!!!!!  I was very sick 4 years ago when I first began to have symptoms of Sjogrens.  I got hit hard and fast and the first year was terrible.  Though I still have a myriad of symptoms and problems, I have improved immensely.  My eyes were 0 and 2 on the Schirmers test and I could barely get through the day with the pain.  With treatment, I manage much better and don't think about them every minute.  My mouth was so dry, I could not swallow food and was plagued with ulcers and sores.  My tongue burned terribly.  My tongue no longer burns and I seldom get a sore in my mouth.  I use Evoxac but I have also started producing more saliva than in the beginning.  I don't know why but this is true for me.  I had crushing fatigue in the beginning and just got through the day and now I manage my fatigue with lifestyle changes.  Also, most of the time, I just don't have the crushing fatigue I had in the beginning.

I've had cancer and I have gastroparesis and life is not a bowl of cherries but I'm grateful for all the other areas I've improved.  I do hope new treatments will become available.  Personally, I choose to have HOPE.

Anna
« Last Edit: February 08, 2011, 07:31:33 AM by ohiolady »
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CAT1962

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Re: Is there hope?
« Reply #29 on: February 08, 2011, 10:05:12 AM »
Thanks, Dragonfly...it's hard to tell what someone is talking about when comments are everywhere. OMG..my nose itches today... 8)