Mds Uk Patient Support Group

Happy New Year! 2019Happy New Year! 2019

Milestone Moment! 2000 ‘likes’ of the MDS UK Facebook page! And on Christmas Eve too! Merry Christmas from all of us!Milestone Moment! 2000 ‘likes’ of the MDS UK Facebook page! And on Christmas Eve too! Merry Christmas from all of us!

The Simplyhealth Great North Run general ballot will open Wednesday 2nd January at 12:00 and close Monday 4th February at 13:00. Runners will be notified within 5 days of the ballot closing whether they have been successful or not. Successful runners will be able to raise funds for any charity of their choice but please run for MDS UK!
Here is the link to the reminder service for runners to register and they will email you when the ballot opens: http://support.greatrun.org/reminderservi ce/?id=881
Runners who were unsuccessful in securing a place in the ballot will then be able to contact charities for places from 4th February up to the registration deadline of 12:00 on Monday 1st July.

We are so very close to 2000 ‘Likes’ for our MDS UK Facebook page! Could you help us by inviting friends to follow us too? 2000 by Christmas!

Latest Newsletter now out!

Thank you to everyone who shared and re-Tweeted our news! Please look out for future events and become an MDS Ambassador!Thank you to everyone who shared and re-Tweeted our news! Please look out for future events and become an MDS Ambassador!

We’re at RAF Coningsby today raising awareness of MDS and bone marrow donation DKMS UK RAF Coningsby

We have some exciting news for 2019 with places in next year’s Great North Run! Interested?We have some exciting news for 2019 with places in next year’s Great North Run! Interested?

With ‘Black Friday’ and Christmas soon to be upon us many will be thinking of buying gifts and major items. Help MDS UK by joining ‘Give as You Live’ . This is an easy way to do your online shopping but also raise money for Charity. Please make use of it and help us to maintain support for patients and families with MDS

Have you checked out the MDS Forum?

Just diagnosed with MDS? Here’s a few questions to ask:
How sure are you about the diagnosis of MDS? Can you explain what MDS is? How is it different from leukemia? Do I need any other tests before we can decide on treatment?... Do I need to see any other types of doctors? What type of myelodysplastic syndrome do I have? Which risk group does my MDS fall into? How might this affect my prognosis and treatment options? Are there other factors that could affect my outlook or treatment options?
When deciding on a treatment plan:
How much experience do you have treating MDS? What treatment choices do I have? Do we need to treat the MDS right away? Which treatment, if any, do you recommend, and why? Should I get a second opinion before starting treatment? Can you suggest a Center of Excellence? What should I do to be ready for treatment? How long will treatment last? What will it be like? Where will it be done? What are the risks or side effects of the treatments that you recommend? How long are they likely to last? Will treatment affect my daily activities? What is the outlook for my survival?
During and after treatment:
Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply to you, but getting answers to the ones that do may be helpful.
How will we know if the treatment is working? What type of follow-up will I need during and after treatment? Is there anything I can do to help manage side effects? What symptoms or side effects should I tell you about right away? How can I reach a CNS or consultant on nights, holidays, or weekends? Do I need to change what I eat during treatment? Are there any limits on what I can do? Should I exercise? What should I do, and how often? Can you suggest a mental health professional I can see if I start to feel overwhelmed, depressed, or distressed? What would my options be if the treatment isn’t working? Where can I find more information and support?
Take a pen and paper and write your questions down!
See More

Latest news and update following MDS World Awareness Day

When I was diagnosed with MDS/AA in 2004 it is a secondary disease for me. I found it difficult to get information far less support for this disease

Sophie had just started this group. Oh, how it was needed.... good for Sophie, since then the group has become a life line for a lot of us.

I feel, since I was diagnosed it was relatively rare.

However, since scientist have been doing a lot more research into this disease, it's helping Medical staff to understand what is happening to us (the patient).

Sophie,her team and the patient support groups,the online closed MDS group, we,are all helping each other.

A big thank you to all!

Thank goodness for MDS Patient Support. They were a lifeline of positivity just after my totally unexpected and devastating diagnosis.

MDS is a rare illness which is why a patient support group is so important. You don't have to be alone in your battle with this disease. The patient support group provides good quality information as well as a supportive environment to ask all those questions and get support from others who share this journey. "I love the light for it lets me see the way. I love the dark because it lets me see the stars"

Keith's wife Barbara here. I had never heard of MDS until my diagnosis - I've been "watch and wait" since 2013 and began using epo and GCSF this year. I have learned so much from other people's Facebook postings, it has put my own MDS symptoms in perspective, and I know that advice and support is readily available when I need it from people who understand the worries and complications of living with MDS.

Great group always can find advice support and information when needed from fellow group members.

An extended family for MDS patients and carers. It is a good place to go for those who are worried, want advice and support or just want to chat with a group of people who fully understand what they are going through. Dare I say you'll find more empathy and understanding here than you ever will from your doctors.

Always there to help when you need them whether it be for medical advice or just a supportive ear from others who understand. Thank you.

Always find advice and support when needed. You may feel isolated at times but you can always find someone will respond to your questions or just share your feelings. Holistic approach

Absolutely fantastic organisation that has been there for me since I was first diagnosed in 2008. The Fb page is an excellent source of peer support and information and I'm very grateful for it.

A fantastic support group which helps ease the concerns of people who suffer from this terrible rare disease. Also promoting awareness of a disease that not many people know about.

A Fantastic group. A dear friend of ours has just lost his life to MDS. Let's get behind the group and drive it forward R.I.P Steve.

When I was diagnosed with MDS/AA in 2004 it is a secondary disease for me. I found it difficult to get information far less support for this disease

Sophie had just started this group. Oh, how it was needed.... good for Sophie, since then the group has become a life line for a lot of us.

I feel, since I was diagnosed it was relatively rare.

However, since scientist have been doing a lot more research into this disease, it's helping Medical staff to understand what is happening to us (the patient).

Sophie,her team and the patient support groups,the online closed MDS group, we,are all helping each other.

A big thank you to all!

Thank goodness for MDS Patient Support. They were a lifeline of positivity just after my totally unexpected and devastating diagnosis.

MDS is a rare illness which is why a patient support group is so important. You don't have to be alone in your battle with this disease. The patient support group provides good quality information as well as a supportive environment to ask all those questions and get support from others who share this journey. "I love the light for it lets me see the way. I love the dark because it lets me see the stars"

Keith's wife Barbara here. I had never heard of MDS until my diagnosis - I've been "watch and wait" since 2013 and began using epo and GCSF this year. I have learned so much from other people's Facebook postings, it has put my own MDS symptoms in perspective, and I know that advice and support is readily available when I need it from people who understand the worries and complications of living with MDS.

Great group always can find advice support and information when needed from fellow group members.

An extended family for MDS patients and carers. It is a good place to go for those who are worried, want advice and support or just want to chat with a group of people who fully understand what they are going through. Dare I say you'll find more empathy and understanding here than you ever will from your doctors.

Always there to help when you need them whether it be for medical advice or just a supportive ear from others who understand. Thank you.

Always find advice and support when needed. You may feel isolated at times but you can always find someone will respond to your questions or just share your feelings. Holistic approach

Absolutely fantastic organisation that has been there for me since I was first diagnosed in 2008. The Fb page is an excellent source of peer support and information and I'm very grateful for it.

A fantastic support group which helps ease the concerns of people who suffer from this terrible rare disease. Also promoting awareness of a disease that not many people know about.

A Fantastic group. A dear friend of ours has just lost his life to MDS. Let's get behind the group and drive it forward R.I.P Steve.

When I was diagnosed with MDS/AA in 2004 it is a secondary disease for me. I found it difficult to get information far less support for this disease

Sophie had just started this group. Oh, how it was needed.... good for Sophie, since then the group has become a life line for a lot of us.

I feel, since I was diagnosed it was relatively rare.

However, since scientist have been doing a lot more research into this disease, it's helping Medical staff to understand what is happening to us (the patient).

Sophie,her team and the patient support groups,the online closed MDS group, we,are all helping each other.

A big thank you to all!

Thank goodness for MDS Patient Support. They were a lifeline of positivity just after my totally unexpected and devastating diagnosis.

MDS is a rare illness which is why a patient support group is so important. You don't have to be alone in your battle with this disease. The patient support group provides good quality information as well as a supportive environment to ask all those questions and get support from others who share this journey. "I love the light for it lets me see the way. I love the dark because it lets me see the stars"

Keith's wife Barbara here. I had never heard of MDS until my diagnosis - I've been "watch and wait" since 2013 and began using epo and GCSF this year. I have learned so much from other people's Facebook postings, it has put my own MDS symptoms in perspective, and I know that advice and support is readily available when I need it from people who understand the worries and complications of living with MDS.

Great group always can find advice support and information when needed from fellow group members.

An extended family for MDS patients and carers. It is a good place to go for those who are worried, want advice and support or just want to chat with a group of people who fully understand what they are going through. Dare I say you'll find more empathy and understanding here than you ever will from your doctors.

Always there to help when you need them whether it be for medical advice or just a supportive ear from others who understand. Thank you.

Always find advice and support when needed. You may feel isolated at times but you can always find someone will respond to your questions or just share your feelings. Holistic approach

Absolutely fantastic organisation that has been there for me since I was first diagnosed in 2008. The Fb page is an excellent source of peer support and information and I'm very grateful for it.

A fantastic support group which helps ease the concerns of people who suffer from this terrible rare disease. Also promoting awareness of a disease that not many people know about.

A Fantastic group. A dear friend of ours has just lost his life to MDS. Let's get behind the group and drive it forward R.I.P Steve.