Lupus in Nicaragua

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PattyLatty
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Date Joined Mar 2006
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   Posted 7/27/2009 3:55 PM (GMT -7)   
I just returned from a weeklong medical mission in a mountain town in Nicaragua and couldn't wait to share an experience with all of you.

I had caught a ride to the dormitory for deaf kids that we support and the driver, a young Nicaraguan man who was working part-time with our electrician, and I started talking and I asked him about himself, including what kind of work he does. Turns out he does quite a bit of volunteer work. At one point he started talking about an organization of 1,000 lupus patients he's trying to help. He didn't know me from Adam, by the way. That peaked my interest and we agreed to correspond by email so I could find out more about it. The nicaraguan people (esp. the poor people and the folks in the poor town where we were) don't have doctors who can treat their lupus. They also don't have any way to get meds for it.

I have read statistics that state that african-americans and hispanics have a higher risk of acquiring lupus than caucasians, but it just never occurred to me that a third world country like nicaragua would have a lot of cases.

Hopefully I can figure out something that would help them, but I think it's a bigger problem than just advertising the disease.

I came home realizing how lucky we all are to have medical care and treatment.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


jhmom
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Date Joined Oct 2004
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   Posted 7/27/2009 7:03 PM (GMT -7)   
Pat, you know I have never thought about a third world country having a problem with lupus, I don't know why???? But you are right, we are very blessed to have the medical care and treatment we have available to us. We may complain about this doctor or that doctor but ultimately we've got it made! Something definitely needs to be done about this, maybe an organization can reach out to people to raise money for these people suffering with this disease. Kind of like how they raise money and advertise the meds used to treat Malaria???

Thank you for sharing your experience with us and I am glad you had safe travels!
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 7/29/2009 9:06 AM (GMT -7)   
Pat, thanks for that perspective.   It's not something I had thought about either, - and I'm sure Nicaragua isn't alone.  Please keep us posted as you continue to learn more.  And I'm really impressed with your ability and willingness to take on a trip like that.  I'm a terrible traveler - how do you keep from flaring?
Lucy
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 7/29/2009 9:35 AM (GMT -7)   
I paced myself, Lucy. Everyone knew about my lupus because I hadn't been in 5 years, but my hubby goes every year. Secondly, half the group were doctors. So I stopped when I needed to, turned a stick into a cane, stayed out of the sun, and took taxies when I was too tired to walk any more. It was a tough trip but well worth every minute. And this week: rest.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 7/29/2009 9:58 AM (GMT -7)   
Hey Pat:
 
I'm so glad you were able to make the trip.  Yes, we're very lucky here in America where we have medical care for our illnesses.  I've not been to the country you've been to, but I've been to refugee camps in Solvenia when the war was going on.  The refugees were lucky to have shelter and food, let alone any help from doctors. Since living overseas I found it interesing how other countries deal with Lupus.  Thanks for reminding us that we're blessed even tho sometimes we don't feel that way.  Keep us posted on how things are going and if something is discovered to help them.  Hope you're doing ok and getting some rest.  You're always in my thoughts and prayers.
 
Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 7/29/2009 11:06 AM (GMT -7)   
Well, bless you, Pat, and your hubby, and all those who try to make other lives better.
 
I was recently filling our water pitcher for the fridge - we have a water filtration unit w/ it's own faucet and it sometimes takes awhile to fill.  I was getting impatient and cranky about having to "wait" while it filled (had to hold the lever down).   I suddenly realized what a whiney boor I was being.  I don't have to walk to find/obtain water, in dust and heat, and then carry it back to where I started from, nor do I have to worry about it being clean or fresh.  I won't even get into having enough for washing, cooking, etc.  You get my drift. 
 
So I'm trying to be alert to other "wake-up calls" and I'm glad you shared. 
 
Lucy
 
 
diagnoses:  mono 1972; postviral CFS 1997; fibro 1998; UCTD 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 7/30/2009 9:48 AM (GMT -7)   
This article is from 1990 but gives an overview of lupus and other AI diseases in other parts of the world.
 
 
I spent quite a lot of time in SE Asia and was always happy to NOT get sick there.  In countries like Singapore their health care is excellent but most other countries have poor availability of doctors and clinics.  Sometimes there are good facilities in the large cities but limited or even none in the boondocks.  Of course, that situation exists in the USA as well.  Doctors are definitely clustered in the big cities and not enough in rural areas.
 
Countries like India and China with their enormous populations of mostly poor have unimaginable challenges.  My guess is that most people have no access to healthcare other than some traditional healers in those countries. 
 
Just think of the problems that many of us have had diagnosing and treating our ailments even with great healthcare. 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2009 11:17 AM (GMT -7)   
Interesting article Bill. I grew up in third world countries, but always in the large capital cities and we had very good health care. But rural Nicaragua is another thing altogether. Nicaragua is the second poorest country in the Western hemisphere and the farther from Managua you go, the poorer the hospitals, and the worse the medical care becomes. I went to a hospital in Jinotega, where we work, looking for a cane, and there was a crowd waiting out on the street to see a doctor. But the hospital was closed for their 2 hour siesta.

The problem that third world countries have with RA diseases is similar to ours but multiplied a thousand times. We have established, and support a hearing clinic in Jinotega and our doctors have trained a small group of Nicaraguan doctors to perform ear surgery. Prior to the establishment of our mission there were no ENT surgeons in the country. We also did a study to determine why there is such a prevalence of hearing loss in the country and determined that it's primarily because of the tendency of doctors to prescribe Gentamicin to pregnant women. So with doctor training and education, the problem can be alleviated to some degree.

But we all know that there isn't that kind of band-aid for AI diseases. Fundraising is the obvious place to start, but to me the problem seems overwhelming. It was interesting that all the pharmacists I spoke with were well versed when I told them I had lupus. They also were aware of the inherent difficulties of the disease. I would like to help, but am stumped.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 7/30/2009 11:58 AM (GMT -7)   
Patty,
 
Do what you can.  I participate in various support efforts in my area including working with disabled patients.  In 2005 I was completely crippled and have made a nearly miraculous recovery and want to help those who have simiilar problems.  My efforts won't "save the world" but if I can help just one person cope with their problems it is worthwhile.  Actually I have been able to help quite a few both locally and over the web.  I am less active in lupus because it was polymyositis that devastated me.
 
In regard to dealing with AI diseases there are probably a lot of common factors in these diseases.  Once more is known better treatments and even cures will begin to emerge.  There is one new technology that holds great promise for many injuries and diseases and eventually the researchers feel it will be useful in curing systemic diseases like lupus or myositis...but that is some years away.
 
The technology is called bionanotechnology and will probably first be applied to spinal injuries, alzheimers, and parkinsons but cancer and others are already being researched.  It is a signaling technology that will instruct the body to regrow cells.  The challenge is to figure what signals what.  They have already been successful in regrowing spinal neurons in lab animals.  Very exiciting but it will take a lot more research and money and time.  I questioned the head of research and he said they had already begun exploring treating AI diseases with immunologists.
 
Dr Stupp, Northwestern U.
 
 
Bill
MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 7/30/2009 3:19 PM (GMT -7)   
Bill,

That's all new to me - and worth following. Our grandkids are going to grow old in a different world than ours.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1299
   Posted 7/30/2009 3:21 PM (GMT -7)   

Crazy thing about the technology is the range of potential applications from medicine to growing solar panels.  It will be exciting times in the future with great hope.

Bill


MCTD (lupus, scleroderma, polymyositis).  Diagnosed 2005.  Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005.  Recovered and now active in skiing, tai, chi, hiking, golf.  Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
 
Remain optimistic and you can overcome the odds.


MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 7/30/2009 4:13 PM (GMT -7)   
Patty,
Wow! What an awesome opportunity. It has been my lifelong dream to be a missionary nurse! I admire you and your husband. That's such a worthy cause. God Bless You, Judy

PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 7/31/2009 7:09 AM (GMT -7)   
Thanks Judy. Montezuma is taking his revenge on me, though, even though not a blade of lettuce passed through these lips, I used bottled water to brush, and, well, I know the drill. But he got me anyway.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 7/31/2009 7:39 AM (GMT -7)   
Patty, I lived in an area of the US that every year has this big medical group bring in medical care (RAM) because the people there can't get care either because the doctors are lacking or money is lacking from what I understand the group is usually involved in third world countries but discovered the problems in that area and decided to try and help. The thing is people wait all day to be helped and get turned away because there are just so many of them and only so many doctors. It was really sad because they were only there 2-3 days and some people came days ahead of time and camped out at the site just to try and get medical care. I even heard about one woman who waited in line all day the first day and most of the second day before she was able to get inside to be seen and she slept on the ground so she wouldn't lose her place in line, the reason I found this so amazing is that she was elderly and had no chair or any way to take a break from standing during the day. I imagine it is even worse in the places where you went.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

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