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STORIES -'A Sister's Concern' 
-J's Story

Excerpts from a letter to a Lupus Foundation
It was wonderful hearing from you and I intended to write back immediately, but have been completely sidetracked by this monumental work deadline (which is still giving me tension headaches this morning!). This communication with you is more important to me, I might add, so I've pushed it aside until I have written quickly to you.

I was delighted to meet Michael and John - so talented, polite, knowledgeable, intelligent... all the nice things you like to see in young people these days and I was sorry their time was too short to show them more about Ghana.  Do send Michael my regards and I hope things go well for him in Austin.

It was a miracle that he could put me in touch with you and I'm so happy to get to know you. My sister J has taken us through the worst apprehension and anxiety as a family and we can only now breathe a bit, now that she's getting care in the UK. For nearly a year she remained undiagnosed here in Ghana (she turned 45 last year), finally we sent her to the UK with our 83 year old mother for company and they diagnosed and started to treat her immediately. She's been on a combination of CellCept (now 2,000 milligrams a day) and Prednisone (5 or 10mg, can't remember) and a cocktail of other medications like the Epo injections, Blood Pressure medications, etc.

She's only now doing better but it was very tricky for a while there. About four months into the treatment they figured she wasn't recovering fast enough (nephritis) so they upped the CellCept to 3,000 milligrams (I think too quickly) and she suffered a serious infection, crashing her white blood cells completely.  That was the worst time, and I can't believe even I survived the experience.  But our Good Lord being so good, she's better now and perhaps even her new white blood cells are healthier! They've also taken her off the Epo. Those Drs had this thing about 'studies have shown that blacks do better on 3,000 milligrams and Indians 2,000 milligrams' so they figured they must do that for a black woman, I guess!

Her children are living with me in Ghana in the meantime, I've enjoyed having them and they are adorable, but it's obviously taken its toll on them. My mother still keeps her company in the UK and they are staying with a cousin who has been an absolute angel to us in these times – shepherding her to hospital, etc.

J can go out on her own now, cook for my mum, etc, but is often tired and the Drs say she's not yet in remission even though they are happy with her progress.  I myself have had to travel to the UK more times than I've ever done in my whole life to see her, but I wouldn't have it any other way. Luckily, I'm not having to do it so much now, since she's doing better, but i miss her and wish she were well enough to come home.

Interestingly, my first cousin who lives in the US suffered from lupus (nephritis) also about 12 years ago and is well in remission now.  She was finally treated at the Mayo Clinic. Before that the Drs seemed to be in the woods and had been giving her the antibiotics that seemed to be making things worse for her (she was allergic to sulphur).  For that reason they estimated that the disease had been drug induced in her case. J has suffered the same symptoms as her but did not get to dialysis stage. Obviously there is a genetic factor.

There are more and more people being diagnosed with lupus in Ghana but it’s still a little-known disease here.  Some, like J, have been lucky to get treatment abroad, but several are being treated locally.  We have good doctors here, but up until June last year when we finally sent J to the UK, blood samples had to be sent all the way to South Africa for double stranded ANA and other SLE indicator tests. To get an idea of some of  these healthcare woes, you may look up the website of one of J’s best friends dedicated to communicating the personal experiences of sufferers such as herself and J who are really the lone voices in these parts: http://www.sharecare4u.com/.

It was slightly encouraging however to be told by a family friend of ours who is a surgeon at Ghana's main teaching hospital that a visiting Physician from the USA (a woman) had recently delivered a presentation to the Medical fraternity on Lupus, and that he had been surprised to know that there were several patients being treated at the hospital (without his knowledge!).  Another retired Dr I mentioned J's case to told me that in all his years of practice he had only come across one such patient. I am really looking forward to a time when all that will change!

So you see,  you are truly a Godsend and I really look forward to continuing our communications. J has only recently started visiting a health club around the corner which has email facilities so I would need to ask her for her email address.  

She'll be happy to hear from the Foundation. I also plan to take her on vacation to the USA in the summer if she's allowed to travel.

So I do look forward to hearing from you again.  Please feel free to send me the information also and thanks for keeping in touch.
Very best regards


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