An Update On My Mom's Condition · 9:09pm Aug 20th, 2017
An Update On My Mom's Condition
As many of you know, my mom had a very bad injury at her job a few months back, which led to the activation of a recessive genetic disorder know as Vikings Disease, which unfortunately has no cure.
For those of you who do not know what Vikings Disease is, basically it is a disorder which attacks all of the joints in the body and causes them to cramp/ curl up. Many people with advanced stages of Vikings disease have trouble walking because their toes are curled up and trouble gripping things because their fingers are glued into a shut position.
I have been walking with my mom every morning in hopes that it will help her joints to loosen up. She does special exercises that help her joints, she takes baths which help to soothe them, and I massage the joints which helps to keep them loose/ prevent them from cramping.
However, despite our best efforts, my mom still gets some pretty bad attacks in her joints. The only thing we can do is just massage them until they stop cramping/ causing her pain. Sometimes I bring her a tub of hot water to soak her hands and feet in afterward to help sooth the cramps if it is really bad.
Looking at my mom's condition, I wish that there was a cure. It is really hard seeing her in pain every day and not really being able to do anything about it.
I wish that there was more awareness for this illness so people could raise enough money to fund more research into it that could lead to a cure. :(
If anyone happens to know of any organizations that are trying to raise money for the treatment of Vikings Disease, let me know. I would like to share it as much as I can so I can help find a cure to my mom's disease in some way.
Edit: Some of my friends found an organization that is raising money to find a cure for Vikings Disease (also known as
dupuytren's contracture)! You can help donate to the cause by visiting this link here: https://dupuytrens.org/
Thank you so much to Hoops and grey mane for finding this organization!
I'm so sorry it's like that for you and your mother. My thoughts and best wishes go out to her and you and hope things will get better for you two. I know that's not much but I do hope things get easier.
4642140 Awww thank you so much. That means a lot to me.
I think a found a organization supporting Dupuytren Disease. I don't know if it's the same, but it seems similar. Here is the link https://dupuytrens.org
Sorry to hear your mother is still having such issues, have you tried looking up any sites that help you find advocacy groups that you're looking for?
4642151 Yes, Dupuytren's Disease is another name for Vikings Disease! Thank you so much for sharing this organization! I will edit my blog post to include a link to the website. :)
4642156 I haven't looked too much into it, but I want to start looking into various organizations and see if there are any who might be able to do some kind of free treatment for my mom.
4642174
No problem. I hope your mother feels better.
4642178 I updated my blog and gave you credit for finding the charity organization. Thank you so much for finding it. :)
Im so so sorry about the situation with you and your mother. My mother has cancer and she is going to be getting the big surgery soon. I hope the best for you and her.
4642177
I'll have a look and ask around to see if anything comes up.
Huh odd, most info I found only mentions effects on hands and not feet and technically not effecting joints but details, details. Anyway while there is no cure there still are treatments that either slow down stage progress or restore mobility. Treatments range from various types of injections to surgeries but well consult an actual doctor and not me. So at least that means that your mother doesn't have to end up with completely unmovable fingers.
Still she is very unlucky to be even effected at all. I am sorry to hear that she has it.
And well Dupuytren's contracture isn't life threatening and effects only certain population so I guess it just isn't high on the list of things to be cured. Though there must be some researches but I kinda wouldn't bet on the radiation one.
4642177
Found something.
https://dupuytrens.org/
4642196 I am very sorry to hear about the situation with your mom. I hope that her surgery will be a success. I will be keeping you and your family in my prayers.
4642199 Thank you for looking into some resources. That means a lot. :)
4642190
No prob!
4642205 My mom has an advanced version of the illness that also attacks other joints of her body, including the joints and various areas of her feet.
If you read the Wikipedia article (of all places lol), it goes into more detail about how Vikings Disease in its most aggressive form goes after other areas of the body.
Surgery and injections can slow down the process but unfortunately they don't cure the illness. :( And some people who get surgery or injections can actually end up making their condition worse or accelerating it. So that is why we have held off looking into any of those options.
I hope that other treatments can surface that aren't as risky. I would love to see a cure for this illness in my lifetime.
4642228
You're welcome.
4642227
I will keep you and your mom in my prayers to.
4642207 Thank you so much for finding that site! Hoops recommended the site as well in the comment section. I appreciate you two looking it up. I will give you a shout out for finding it.
Truly a curse.
4642233 Many hugs and snuggles to you. :)
4642236 Many hugs and snuggles to you, my friend. :)
4642238 Aww thank you so much. That means a lot to me. :)
4642240
You're welcome.
4642244 I hope it is not a curse. Those are harder to find a cure for. :0
4642250
*hugs tightly* No problem. Anything to help.
4642253 Yay!
4642265 Many hugs and snuggles to you as well.
I'm sorry Lyra. I hope those groups manage to find a cure to this disease
4643253 I hope that they will eventually be able to find a cure as well. :)
4643353
medicinal research should see it done
4643384 I am hoping that will be the case. :)
4643969
Time will tell
4644028 It will indeed. :)
4644042
eeyup
4644044
4644520
