Forum SEP BY SEP (Sclérose en plaques)

freddes a écrit :Juste pour info, j'ai trouvé sur le groupe Facebook HSCT, une liste de blogs, pages facebook ou encore chaines youtube de personnes qui ont suivi ce traitement dans le monde.
Il existe bien une assez grosse communauté autour de ce traitement toujours en phase d'expérimentation. J'ai pu déduire après la lecture des échanges entre membres de ce groupe que ce traitement n'est pas pratiqué de la même manière dans le monde entier, rien n'est certains, rien n'est clairement établi.
On parle bien d'arrêt de la progression de la maladie et pas de rémission (on ne sait pas encore si cela peut durer dans le temps)
Cela ne fonctionne pas pour tout le monde

Le mieux est d'aller consulter les pages des ces membres, qui (à mon avis) ne font pas partie d'une "secte"
Ensuite, pour avoir plus d'info, il faut en parler à votre médécin...
Désolé pour la langue anglaise, google traduction vous aidera à mieux comprendre.


Blogs/Websites of members
Par Sean Haight, mercredi 18 avril 2012, 22:03

CIDP

Susan Dean (CIDP Moscow)
http://hsctforcidpnmsnad.blogspot.fr/

Gro Larsen (CIDP, Moscow)
http://grolarsen64.blogspot.no/

Jamie Stewart (CIDP, Moscow)
http://www.jstew34.tumblr.com

Michael Childs (Chicago- CIDP)


Alice Dicroce (CIDP Chicago 2009)
http://ad0237.tripod.com/

Bryan-Ann Hinkle (CIDP, Chicago)
http://www.bryanhinklesct.blogspot.com/

Wendy Nash (CIDP at Northwestern University, Chicago)
http://mymedicalmiracle.blogspot.com/

Andrew Price (Chicago for CIDP)
http://www.shakesandstones.blogspot.com

Benoy Thomas Rajan (CIDP, Chicago)
http://www.btrinchicago.blogspot.com/

Devics NMO

Kassandra Rockhold (Mikal Heintz mother) Devics NMO (chicago) 2015
https://kassbeatsnmo.wordpress.com/

Multiple Sclerosis

Lucy Clarke (Australia)
http://www.todaytonightadelaide.com.au/ ... -stem-cell

Carmel Turner (Australia)
http://www.msstemcell.com/



Billy-Bob Junior (Belgium)
https://billybobjunior.wordpress.com/

Chris McGuey (Ottawa, Canada)
http://my-end-to-ms.blogspot.com/

Toni Brennan (Heidelberg University Hospital, Heidelberg, Germany)
http://tonibrennan.wordpress.com/

George Goss (Heidelberg University Hospital, Heidelberg, Germany)
http://themscure.blogspot.com/2009/11/i ... oyage.html

Karina Grunwald (Heidelberg University Hospital, Heidelberg, Germany)
http://healingreen.blogspot.com/

Min Beattie (India)
http://aca.ninemsn.com.au/article.aspx?id=8605305


Geoeffry DB (Manipal Hospital, Bangalore, India)
https://www.facebook.com/groups/113034538879355/

Shelley Hoffpauir (Manipal Hospital, Bangalore, India)
https://www.facebook.com/groups/495592957120300/

Jerry Marting (India)
http://www.jerrymarting.com/200366156

Martin Melly (India)
http://mymshero.com/

Active Facebook forum with more detailed upates
https://www.facebook.com/groups/6900466 ... ion=stream

Claire Gittins Parry (Manipal Hospital, Bangalore, India)
http://www.clairetoindia.co.uk/

Blog
http://hsctinbangalore.blogspot.com/

Facebook Group
https://www.facebook.com/groups/clairetoindia/

Labour of love for the seven-marathon man
http://www.standard.co.uk/news/london/l ... 38938.html

Emily Reints
http://emilyvsms.wordpress.com/

Tina Sten (Manipal Hospital, Bangalore, India)
http://tinasten.wix.com/pleasehelptina#!home/mainPage


Alissa Lindley Wilson (Manipal Hospital, Bangalore, India)
https://www.facebook.com/groups/184547661595206/

Kristin Campbell (CTCI, Tel Aviv Israel)
http://kristinhsct.blogspot.com

Jorunn Andersen Hustveit (Israel)
http://msstemcell.blogspot.co.il/?view=classic#!/



Melissa Mann Scholz (CTCI, Tel Aviv, Israel)
http://rausausderms.wordpress.com/about-me/

Heidi Strauss (CTCI, Tel Aviv, Israel)
http://www.caringbridge.org/visit/heidistrauss

Cindy Don Bisagno (Florence, Italy)
http://cindyfightsms.tumblr.com/

Judi Bremer (Moscow)
judisjourneyofhope.blogspot.com

Stevie Holt (PPMS, Moscow)
http://www.ms-jog-on.over-blog.com/

Colleen Riley Hughes (Moscow)
http://crileyhughes.wordpress.com/

Tammy Kazen-Richert (Moscow)
http://tamstopms.wordpress.com/

Gala Kuper (Moscow)
http://torussiawithhope.wordpress.com/type/aside/

Keith Moore (Moscow)
http://hsctinrussia.weebly.com/index.html

Aaron O'Halloran (PPMS Moscow)
http://aaronattacksms.com

Natalie Pacaud (Moscow)
http://bestrongbebravebeyou.blogspot.co ... mment-form

Amy Peterson (Moscow)
http://amygoesninja.wordpress.com/

Jeff Root (Moscow)
http://rootingoutms.wordpress.com/

Lorraine Saipe (Moscow)
http://www.torussiawithloz.org/

Facebook page

https://www.facebook.com/www.torussiawi ... ion=stream

Phoebe Scopes (Moscow)
http://hsctmsandme.weebly.com/about-me.html

Brooke Slick (Moscow)
http://msslickdotcom.wordpress.com/

Article featuring Brook and her HSCT treatment choice: To Russia with faith; New Enterprise woman seeks medical procedure abroad with hopes it will halt her multiple sclerosis

http://www.altoonamirror.com/page/conte ... ml?nav=738

Russia MS Treatment Successful

http://wearecentralpa.com/fulltext-heal ... _id=466672

Sheli Godbold Smith (Moscow)
http://kissmsgoodbye.wordpress.com/

Lisa Stallings (PPMS, Moscow)
http://fromrussiawithlisa.wordpress.com/

Vicki Taylor Wilson (PPMS, Moscow)
http://kickinms.com/


Bernard Cronjé (University of Cape Town Hospital, Cape Town, South Africa)
http://bjcronje.wordpress.com/

Elin Maageng Jakobsen (Karolinska University Hospital, Stockholm, Sweden)
http://www.mindevenmore.com/

Christopher Martinsson (Akademiska sjukhuset, Uppsala, Sweden)


Hannah Vesterager (Karolinska University Hospital, Stockholm, Sweden)
http://www.hannastamceller.blogg.no/

Marc Coppins and Barb Yoder Coppins (Chicago)
http://www.MarcStemCell.com

Lisa Vargas Curtis (Chicago)
http://lisashope.com/lisa-story.html

Al Escudero (Chicago)
http://www.caringbridge.org/visit/alescudero

Procedure: Non-myeloablative AHSCT - Cyclophosphamide and rATG)

Date of AHSCT: 8/22/11

Lead Dr.: Dr. Burt

Facility: Northwestern Memorial Hospital. Chicago, ILL (USA)

Kevin Grace (Chicago)
http://www.kmg-stemthetide.blogspot.com ... chive.html

Monique Leventer (Chicago)
https://www.facebook.com/groups/525906880800629/

Tiffany Lilly (Chicago)
https://www.facebook.com/groups/214657901943901/

Chad O`Dell (CIDP/MS Chicago)
http://chadshsctjourney

Nico Pecht (MS, Chicago)
http://gpecht.blogspot.com

Chad Pfefer (Chicago)
http://www.caringbridge.org/visit/chadpfefer

Karen Stamen (MS Chicago)
http://www.karenstaman.com/wordpress/

Brian Tilaro (Chicago, IL.)

Date of HSCT Infusion: July 17, 2007

http://www.allyoumed.com/

http://www.facebook.com/brian.tilaro

Dave Bexfield (Fred Hutchinson Cancer Research Center, HALT-MS trial, Seattle)
http://activemsers.wssnoc.net/forumdisplay.php?f=6

Rachel Carter (FHCRC, Seattle, USA)
http://multiplesclerosismotivates.wordpress.com/

Sandi Selvi (San Diego)
http://www.sandiselvi.com

Systematic Sclerosis (Scleroderma)

Holly Hauser (HSCT for Systemic Sclerosis (Scleroderma) in Chicago)
http://holly-kfs.blogspot.com/