Selma Blair is doing HSCT for MS

[YaddaYaddaHeyYeah]

Apparently Selma Blair is going to do HSCT at Northwestern under Dr Burt for her MS
www.instagram.com/p/BytK0sTnRAG/

www.instagram.com/p/BySwXA3Hfy6/

MS = Multiple Sclerosis

HSCT = Hematopoietic stem cell transplantation

Basically MS is an auto immune problem. So what they do is give you 4 doses of chemo, just enough to kill your faulty immune system. Then they take your own stem cells (so there is no chance of rejection. They give you shots to accelerate the growth of them), and give them back to you so you grow a new MS free immune system.

I’m thrilled for her. I did the same 2.5 years ago and it was the best thing I’ve ever done.

As she is very famous and she’s openly doing it, it’s going to really highlight it and I’m really happy about that. I think more celebs have probably done it but they don’t talk about it.

I did it privately and it cost $50K. Most people fund raise if they can’t self fund. There's also a pay it forward attitude with the people that have done it. A lot of the time if someone has done the treatment and has fundraising money left over then they will pass it on to someone else that is doing it.

Some people get on trials. To get on a trial you usually have to have tried and failed 2 of the DMT drugs. I remember about 3 years ago going through the JACIE (Worldwide HSCT accredited facilities) list and emailing everyone. There were pages of it. Generally they treated cancer patients but because HSCT for MS was getting more press quite a few said they would be offering it to MS patients in the next few years.

It’s not a new treatment. I have met and spoken to doctors that have been doing it since the early 90’s, that keep in touch with their patients and those patients are still doing well.

It has an 80% success rate and 40% will see some improvement in their symptoms, but the aim is to stop progression.

Risks - You could be sick from the chemo. You only have 4 doses of low doses of chemo, just enough to kill the bad immune system, so it's a lot less than the average person has when undergoing cancer treatment.

The DMT's carry a lot of risks too. So it's about choice. For me personally, I was looking for a cure/a stop. So a DMT felt like putting a band aid on a gaping wound IYSWIM, so HSCT was the choice I made.

I started a thread earlier about this but mumsnet took it down because on one post I had put a link to a clinic where people could find out more information if they wanted to.

I have not included any links in this post as I don’t want it deleted again. I have tried to answer questions that other people asked on it though.

I really hope that Selma Blair is in the 80%. I wish her all the luck in the world.

Selma Blair is very open about MS and how it has affected her. She did an interview here

[YaddaYaddaHeyYeah]

I've never heard of CIDP @weegiemum I just googled it. Are you able to get on a trial? In my googling a few links down it said that Northwestern are doing a trial. I imagine under Dr Burt. He's quite famous in the HSCT world.

[YaddaYaddaHeyYeah]

www.instagram.com/p/B0WCYC6HOyp/

Wow. I can wait to read her interviews about it. Well done Selma :)

[Tesbel]

Very interested in this. I have a very close family member that is seriously considering having the treatment done so keen to read all that I can about it. Thanks for posting OP.

[Ibizama]

Tesbel, tell her to join the HSCT FB pages. Full of info

[DisgraceToTheYChromosome]

Hope at last! I lost someone very dear to me from MS, and watching someone fade over 2 decades was just horrible.

[Likethebattle]

@DaisyDreaming i’m so sorry I watched my dad die from progressive MS.

[Tesbel]

Thanks ibizama will pass it on 💝