Posts: 17212
Threads: 462
Joined: March 29, 2015
Reputation:
30
RE: Kallmann Syndrome
April 24, 2018 at 3:12 pm
All I can say is that I hope stem cell research will come to fruition soon enough for people to replace their poorly functioning limbs, organs, glands and similar.
Damn it, that's one of the main reasons why we're here on this forum to figure out how to tackle this problem
![[Image: 97dfK5oN_o.jpg]](https://images2.imgbox.com/fa/92/97dfK5oN_o.jpg)
teachings of the Bible are so muddled and self-contradictory that it was possible for Christians to happily burn heretics alive for five long centuries. It was even possible for the most venerated patriarchs of the Church, like St. Augustine and St. Thomas Aquinas, to conclude that heretics should be tortured (Augustine) or killed outright (Aquinas). Martin Luther and John Calvin advocated the wholesale murder of heretics, apostates, Jews, and witches. - Sam Harris, "Letter To A Christian Nation"
Posts: 10470
Threads: 165
Joined: May 29, 2013
Reputation:
53
RE: Kallmann Syndrome
April 24, 2018 at 3:20 pm
I've not heard of Kalmann.
I've blabbed on about mine before, but since this thread is specifically for that purpose, I'll chime in again.
Click this link for more, but I'll quote what specifically applies to me.
http://spinabifidaassociation.org/what-is-sb/
Quote:Spina Bifida is the most common permanently disabling birth defect in the United States.
Spina Bifida literally means “split spine.”
Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about 8 babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.
...
Myelomeningocele (Meningomyelocele), also called Spina Bifida Cystica
This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. 70 to 90% of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.
I'm not one to segregate with spina bifida patients, or even the disabled in general, but I do like a YouTuber that discusses spina bifida, which she has:
https://www.youtube.com/user/AndreaLausell
"For me, it is far better to grasp the Universe as it really is than to persist in delusion, however satisfying and reassuring." - Carl Sagan
Posts: 30129
Threads: 304
Joined: April 18, 2014
Reputation:
92
RE: Kallmann Syndrome
April 24, 2018 at 4:44 pm
I'm sorry to hear about this. Wasn't previously aware of this medical concern.
The granting of a pardon is an imputation of guilt, and the acceptance a confession of it.
Posts: 28435
Threads: 525
Joined: June 16, 2015
Reputation:
90
RE: Kallmann Syndrome
April 24, 2018 at 5:16 pm
(April 24, 2018 at 2:24 pm)Aegon Wrote: I had FSGS (collapsing variant) `which caused my kidneys to fail, but thankfully it has not reoccurred since I got a transplant.
I also have tarsal coalition which has caused me serious pain any time I'm on my feet since I was around 12 or 13, but I've adjusted to it and only when I am on my feet for hours will it become debilitating. I have orthodics but to be honest they don't help a whole lot.
Ortho-dics. Good one!
Being told you're delusional does not necessarily mean you're mental.
Posts: 9176
Threads: 76
Joined: November 21, 2013
Reputation:
40
RE: Kallmann Syndrome
April 24, 2018 at 5:28 pm
I have this too. I took testosterone shots so I could hit puberty, but my parents stopped taking me to get the shots when I started getting more aggressive towards the assholes in my life.
Posts: 381
Threads: 114
Joined: November 10, 2015
Reputation:
6
RE: Kallmann Syndrome
April 25, 2018 at 9:30 am
(April 24, 2018 at 5:28 pm)Chad32 Wrote: I have this too. I took testosterone shots so I could hit puberty, but my parents stopped taking me to get the shots when I started getting more aggressive towards the assholes in my life.
If you're an adult now, I'd recommend getting back on them. They do help, a little.
Posts: 9176
Threads: 76
Joined: November 21, 2013
Reputation:
40
RE: Kallmann Syndrome
April 25, 2018 at 9:52 am
I have a low budget, but maybe I'll bring it up to my parents. Then again, my mother won't even help me apply for dental insurance, so I doubt she'd be for me getting shots as well.
I'm an adult, but still partially dependent.
Posts: 381
Threads: 114
Joined: November 10, 2015
Reputation:
6
RE: Kallmann Syndrome
April 25, 2018 at 1:50 pm
(This post was last modified: April 25, 2018 at 2:24 pm by Mechaghostman2.)
(April 25, 2018 at 9:52 am)Chad32 Wrote: I have a low budget, but maybe I'll bring it up to my parents. Then again, my mother won't even help me apply for dental insurance, so I doubt she'd be for me getting shots as well.
I'm an adult, but still partially dependent.
200 mg of testosterone will last about 6 months, and costs about $100.
(April 24, 2018 at 1:51 pm)mh.brewer Wrote: Have you tried transdermal treatment instead of injections?
You get less with testosterone gel, and the stuff costs more. I did use it as a teen, but it wasn't working well. Plus it makes me break out.
Posts: 9915
Threads: 53
Joined: November 27, 2015
Reputation:
92
RE: Kallmann Syndrome
April 25, 2018 at 4:59 pm
(This post was last modified: April 25, 2018 at 5:06 pm by LadyForCamus.)
(April 24, 2018 at 2:09 pm)KevinM1 Wrote: (April 24, 2018 at 2:06 pm)mh.brewer Wrote: See bold
Use to see this all the time in the nursing homes. What's your treatment/prophylaxis regimen?
A combination of simply getting off my butt (my wheelchair can tilt back), topical ointments of varying kinds, and protective coverings. Prisma/Promogran when things start breaking down.
When it was really bad, I had to visit the local wound care clinic, but I have a pretty decent system of dealing with them now. Still hurts, though.
Kevin, are you currently taking any high-protein nutritional supplements for your pressure ulcers? There was a formula that we used in the nursing home that worked wonders for patients, but I will have to look it up because I don’t remember the name of the product.
Edit:
It’s called Juven, if you’re interested!
https://abbottnutrition.com/juven
Nay_Sayer: “Nothing is impossible if you dream big enough, or in this case, nothing is impossible if you use a barrel of KY Jelly and a miniature horse.”
Wiser words were never spoken.
Posts: 5466
Threads: 36
Joined: November 10, 2014
Reputation:
53
RE: Kallmann Syndrome
April 25, 2018 at 5:30 pm
Interesting. I'll have to look into it.
|
