My Sis in Law

[bioflame]

Hello,

I need some support. My sis in law wsa diagnosed a little over a year ago. Her doc says she has 3 -6 mos left.

Im so upset over this - she lives in S. Carolina and Im in Arizona.
Why hasnt this disease been more researched, drugs to treat?

Thanks
Sandi

 

[brooksea]

Hi Sandi,

Sorry about your Sister-in-law. Welcome to the forum. You will find lots of info and support here.

Usually people with ALS don't live long enough for any drug discovery to be profitable for the pharmaceutical companies to want to waste their time. We are hoping that Lithium may slow progression so that more people with ALS live longer and have a greater voice, so drug companies will see dollar signs! It's hard to advocate for such a debilitating disease when you are robbed of everything necessary to communicate with others. Well, enough of that, sorry.

Please feel free to ask any question you may have...

 

[andyvaughn]

Sandi, unfortunately, CJ is right.. there is no money in ALS research. There are billions to be made on erectile dysfunction, acne, asthma, etc.. that is why you see 28 different treatment options for more common diseases, but this one is typically fatal quickly, has a small patient population, IF you believe the current numbers of 35000, which I think is a gross under-estimate.
I would suggest you write your senators and representatives, let them know you will vote according to how they vote, if they decide that we aren't worth spending money on, then they aren't worth your vote. Nothing changes until something changes...
Andrea - wife of Pals Jim

 

[MtPockets]

Hi Sandi, Welcome to the forum.
As you are finding out ALS is the unknown, un popular, disease. We spend Billions on cancer research, and other major diseases, because they are the one's people are talking about all the time. We all need to help spread the word about this killer disease at every opportunity that we get.

I hope you can find the support you need here on the forum. These are a great group of people from all walks of life. ALS can strike ANYONE at ANYTIME.

 

[bioflame]

My Sis in law

I hope I replied in the proper place.

thx to all that gave me support! I so appreciate.

Its so sad more isnt being done about this condition.

I notice Steven Hawking is alive, hes had ALS since he was in college during his 20's. I dont understand the progresstion of this disease.

Sandi

 

[CindyM]

Hi Sandi- there are a lot of unanswered questions with this disease. I am sorry it is affecting your family. We will help in any way we can. Cindy