What does your future look like?
Auto Immune and Multiple Sclerosis (AIMS)
AIMS strives to preserve and protect the health and wellbeing of UK patients suffering from Multiple Sclerosis and Autoimmune disease, in the provision of signposting, support and grants.
Our founder Alison talks to Shelagh Fogarty about the impact on the autoimmune community of the unlocking after Covid on July 19th and how people in our community are feeling.
The interview with Alison starts at around 10 minutes in on the catch up for Wednesday July 7th. Click here to hear Alison's Interview with Shelagh Fogarty
Just before Covid struck, AIMS was lucky enough to interview 3 of the most respected and experienced HSCT practitioners on the planet - Dr Guillermo J. Ruiz-Arguelles, from Clinica Ruiz, Puebla, Mexico, Dr Denis Fedorenko, from Pirogov Hospital, Moscow, and Dr Majid Kazmi, from King’s College Hospital and London Bridge.
You asked: We listened! We asked the HSCT community what they wish they’d known before embarking on HSCT, and we asked those at the beginning of their HSCT journey what they’d like to know. We narrowed it down to the questions below, and we asked each practitioner the same questions for parity.
We think that this footage will help you to dispel any misinformation that you might be hearing from your neurologists - remind them that these are highly experienced HSCT practitioners at the cutting edge of this treatment. They know what they’re talking about!
These are the questions that we asked the HSCT specialists:
1. How much does it cost, and how long are your waiting lists, and how long will I be away from home?
2. Which type of MS (RRMS, PPMS, SPMS) is HSCT most successful for? What are the success rates? Will my disability improve from treatment?
3. What is the mortality rate at your clinic over the last 5 years?
4. How many patients have you treated over the last 5 years?
5. What protocol do you follow, and what is the process day by day whilst I am at the facility?
6. What complications are possible? Are there specialists available at the clinic to deal with non-HSCT related complications i.e. other illnesses, or injuries? Will this be an additional cost?
7. Am I likely to encounter fertility issues after HSCT? Should I freeze sperm/eggs/embryos prior to HSCT?
8. What is going through the chemotherapy like? Will I require medication after the treatment when I return to the UK? Is there a follow up procedure with your facility after the treatment? What should I do if I become unwell when I return home?
9. Are there problems with a language barrier? Will I be able to understand the staff at the facility? Will I need vaccinations before travelling to the facility?
10. What is the maximum EDSS that you treat? Will you give me a new EDSS when I arrive at the facility to ensure accuracy?
11. What other conditions can you treat at your facility with HSCT?
Who We Are
Here at AIMS, we know that sometimes all it takes to make a difference to someone's life and/or future is a little guidance, support, understanding and in some cases, some financial help.
AIMS is the UK’s first registered charity to support UK residents with autoimmune disease and Multiple Sclerosis, with an emphasis on HSCT.
Our aims are to:
Help and support UK based sufferers of auto-immune diseases, primarily those with Multiple Sclerosis.
Provide advice and support, raising awareness of the latest treatments available and signposting patients to the relevant medical professionals.
Continue making grants to assist with HSCT patients' travel expenses.
What We Do
Making A Difference
Our goal is to promote greater
opportunities for those in need. With access to the right resources, people can become empowered by their own abilities and gain the confidence to fulfil their potential. Learn more about our work by getting in touch with our team today.
With our organisation’s mission always in mind, we strive to find new strategies for dealing with this challenge. Supporting MS sufferers is something that we take very seriously, and our team of volunteers all of whom have been impacted by MS, is working each and every day to make a positive impact. Contact us to learn more about our commitment to this cause.
We're dedicated to stepping up our efforts in addressing how we make grants to best support our mission statements and values. For more information on our grant applications get in touch.
For more information why not get in touch with AIMS to learn more about our work and how you can get involved.
+44 7932 772 368
Registered in England & Wales Charity Number 1177907