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Rare Diseases - Neutropenia or other? #7550946
04/07/22 08:20 AM
04/07/22 08:20 AM
Joined: Jun 2010
Posts: 2,864
Ontario, Canada
S
slydogx Offline OP
trapper
slydogx  Offline OP
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Joined: Jun 2010
Posts: 2,864
Ontario, Canada
My wife suffers from a rare disease known as chronic neutropenia which is an immune disorder where you are chronically and dangerously low on blood cells known as neutrophils. This makes it very difficult for you to fight off bacterial infection, requiring regular injections (in the US people use Neupogen which is a cancer drug, here in Canada many are using a plasma product). You also must always keep antibiotics at the ready and attend the emergency room if you experience a fever over 100F. Obviously, there are much worse afflictions, but being sick all the time...or loving someone who is sick all the time and will never be cured can be emotionally burdensome.

I am curious if anyone on here suffers from or knows someone with neutropenia or other rare disease? Obviously, a sensitive topic and I'll understand if nobody answers, PM also fine.

This took the long way around to say that if you want to talk or share, I'll listen and I'm sure there are many others on here who would also empathize. The best thing we ever discovered where the National Neutropenia Network (US) and CIPO (CAN) with whom we were able to attend conferences and network with people in the same boat.

All I can really offer is an ear and some prayers... but I thought I'd let you know you're not alone in this and even if it is a loved one suffering, you're still shouldering a burden and if you're tired it's not because you're lazy or not trying enough.

Everyone hang in there, and feel free to drop in on this post if you want.

Adam


Just happy to be here.
Re: Rare Diseases - Neutropenia or other? [Re: slydogx] #7550990
04/07/22 09:05 AM
04/07/22 09:05 AM
Joined: Nov 2008
Posts: 4,003
Illinois
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ratbrain Offline
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ratbrain  Offline
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Joined: Nov 2008
Posts: 4,003
Illinois
My prayers are with you.

Re: Rare Diseases - Neutropenia or other? [Re: slydogx] #7551045
04/07/22 09:48 AM
04/07/22 09:48 AM
Joined: Dec 2010
Posts: 8,262
Nebraska, Dawson County
chas3457 Offline
trapper
chas3457  Offline
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Joined: Dec 2010
Posts: 8,262
Nebraska, Dawson County
Prayers sent.

It is a greater mental and emotional struggle to have a loved one that is ill than to be ill yourself.


Charlie


Old age and treachery will always overcome youth and enthusiasm.

NRA Life Member ~ GOA Member ~ NFOA Member ~ UNMLA Member
Re: Rare Diseases - Neutropenia or other? [Re: slydogx] #7551083
04/07/22 10:30 AM
04/07/22 10:30 AM
Joined: Jun 2010
Posts: 2,864
Ontario, Canada
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slydogx Offline OP
trapper
slydogx  Offline OP
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Joined: Jun 2010
Posts: 2,864
Ontario, Canada
Thanks guys.

To be clear, her condition is under control thanks to modern medicine and the generosity of blood/plasma donors in North America and Europe... even if everyone in Canada donated blood plasma it would not produce enough fractionated material to satisfy Canadian demand. There were some shortage scares during COVID lockdowns but all seems OK now.

The daily impact right now is similar to having diabetes... regular injections and special care in general or you'll find yourself in some trouble. We are really very fortunate that it is not something more severe (as long as it is treated)


Just happy to be here.
Re: Rare Diseases - Neutropenia or other? [Re: slydogx] #7551186
04/07/22 12:11 PM
04/07/22 12:11 PM
Joined: Dec 2006
Posts: 8,587
Magna, Utah
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GritGuy Offline
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GritGuy  Offline
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Joined: Dec 2006
Posts: 8,587
Magna, Utah
My first wife had Scleroderma, it's also called the Medusa disease, Localized and Internal, but the first usually always ends up the latter with enough time. She was diagnosed with this at about the age of 20. She had no symptoms prior to that except some tight patches of skin, that were not a bother on her hands, which were actually a precursor to the disease that she found out about later on

There is no cure, its treated with many ways to loosen up the skin structure and internal organs to be functional.

The disease causes , in the localized manner to simply stop being able to move by tightening up the hands or feet, face with the skin, where it manifest's first, then moves to muscles underneath the surface then slowly to bones.

In the internal manner it attacks the functioning organs and does the same thing by tightening them to the point of not being able to do what each is required to simple by turning it into a large mass of useless material which then hardens.

Very rare disease, in the Lupus class, yet there has been no progress for many years in any way to stop it's movement in the body.
She became a experimental patient at the University Hospital here in the city, they would help her with the effects for being a guinea pig with several different types of treatment, many were real odd ball things while I was married to her and a lot of new chemical attempts after we divorced, she need huge amounts of positive encouragement which was extremely taxing for both of us, as the drugs and other things kept her mind in a whirl wind of negativity.

She was once on hot wax treatments to help her hands regain some movement as the were freezing into a solid cuplike from where she could not bend her fingers or wrists and her facial features were distorting due to the skin on her face and head tightening so much it made her look skeletal in that area. When we divorced she moved in with her father in a mobile home and doing the treatments, after done she forgot to turn the wax heater off and left the trailer to visit another, wax caught fire with no one there and burnt the place to nothing, she found out about it on the local news that night. Flipped her out and she never recovered mentally from it.
Was put on some other medicines to control personality shifts, and also new regimes of drugs, which led to her developing cancer, which after three years finally took her out.

Terrible thing to watch a person go thru, and she is better off now as well, so I know a bit about the loneliness and despair of not being able to help in any way, as well as seeing the person you care for go out of control due to being a test unit, she never knew if she was gaining any ground and I could only see negatives in that program, but financially we or her could have never afforded any kind of decent care or even to lessen the advance of the disease, it is a slow mover but once it goes internal there is nothing but damage done, you cannot be on any list for replacements of organs due to the nature of the disease.

Hope you guys can stay as healthy as you can, rare diseases are probably the worst things to happen, but chances of getting them are slim as well, but of no recourse when you find yourself with one.
Good Luck with your lives !!


[Linked Image]

Sorry if my opinions or replies offend you, they are not meant to !

Re: Rare Diseases - Neutropenia or other? [Re: slydogx] #7551746
04/07/22 08:16 PM
04/07/22 08:16 PM
Joined: Jun 2010
Posts: 2,864
Ontario, Canada
S
slydogx Offline OP
trapper
slydogx  Offline OP
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Joined: Jun 2010
Posts: 2,864
Ontario, Canada
Sorry that both of you had to deal with that Grit Guy.
I can't imagine watching someone you love decline like that.
I don't necessarily "like" our socialized medicine here, but it's certainly the only thing that's kept us afloat as her weekly treatment would run in the thousands of dollars each.


Just happy to be here.
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