Sunday, 8 July 2018

NO to Selexipag

Dear Readers,

Yesterday was a wonderful day for our superb England players reaching the Semi-finals, but for us PH'ers it was a VERY bad day!!

It has been announced that NHS England has again REJECTED a new drug that helps to improve quality of life to those with Pulmonary Hypertension. 






Extracts from Ferguson Mary. 07.07.2018. Press Release, exceptionally unjust and grossly unfair. PHocus2021 [online] 

The Pulmonary Hypertension Association (PHA UK) has been campaigning hard for Selexipag to be available in England, following positive decisions in Scotland and Wales. Today, 7th July, NHS England announced that an earlier decision not to approve the drug would be upheld.

Iain Armstrong, chair of the PHA UK, said: “As a patient organisation we know the rejection of this drug is exceptionally unjust and grossly unfair. The symptom burden of pulmonary hypertension is substantial, so access to any drug that may improve outcomes for these patients is vitally important for their health and wellbeing. An urgent review is needed on decisions regarding new therapies available for PH currently blocked or deferred by national funders. As a PH community we want the same equality and access to treatment as other disease areas like cancer. We are extremely disappointed by this decision and as a dynamic patient organisation we will continue to fight for equality and equity of access to service provision in the UK.”

I also contributed to this press release by saying, 
“Living with PH is difficult enough without having drugs being rejected. My message to NHS England commissioners is this: How do you think it makes us feel knowing there are drugs out there that can keep us stable and you’re keeping them from us?

“Every day we struggle to live a ‘normal’ life with PH. Think about what we have to go through – the chronic pain and fatigue, the severe breathlessness, the tears, the frustration and anger and maybe you would understand why I, as a PH patient, am distraught at this decision. You can’t put a price on a life – but you’re making us pay with ours.”

Selexipag, also known as Uptravi, helps to relax and widen the pulmonary arteries, relieving symptoms of pulmonary hypertension and slowing down progression of the disease. It is taken as a tablet, providing an alternative for the first time to drugs usually only available intravenously or by inhalation.

To read the full press release, click here

It is going to be reviewed again in November but as always, we thankfully have the PHA UK fighting for us and they will continue fighting until this drug is approved! Let's hope November will be the month of celebrating my birthday and the approval of Selexipag! #NoCureAlwaysHope

Thank you for reading.

Saturday, 30 June 2018

Chronic Illness and Income

Dear Readers,

When you've got a chronic illness and you're still at working age, some people find that if they are able to do some work, they do really try to make ends meet. Unfortunately illness can be very severe and not everyone can work. This means having little income can be very stressful!!! 

What can you do? Who can you turn to? 

There are a few options out there for people: 
Turn2Us
Money Advice Service
EntitledTo
Government

If you have Pulmonary Hypertension and need help with any benefits or financial support then please visit the PHA UK website. The PHA UK are in partnership with Turn2Us, so please get the financial support you need and deserve!



PHA UK website quotes - "Help is also available from the PHA UK team. Our special publication, ‘Financial support: What could my family and I be entitled to?’ was put together to help you negotiate the minefield of benefit entitlement and get what you deserve. Contact office@phauk.org.uk for your copy."

I am very lucky to have my musical skills and University education. Though my working hours are very reduced, I am able to work a little bit to support my husband by teaching from home. Check out my teaching profile here - 50% off first lesson!!

Thanks for reading!



Wednesday, 13 June 2018

Blue Badge Discrimination

Dear Readers,

This week I’ve done a new video on Blue Badge Discrimination! 


Being a sufferer of PH is difficult every day. Not just because I have cope with my symptoms of chronic pain and fatigue and breathlessness, but because of looking well on the outside. 

I have a blue badge due to this as I cannot walk very far, but I get discriminated a lot for using it! I am young, I drive a Mini, but because of this I get loads of insults! Why should it matter what car I drive?! Are “disabled people” not allowed nice cars?!

Please watch this video and try to understand how all these insults hurt us. Stories of other PH’ers will show up, please pause and read them. Also, you will see the results to a poll of which I did before filming this video... the results are shocking, but it sadly doesn’t surprise me!!! 

You will realise this is a daily problem for all those out there with an invisible illness! 

Once you have watched the video, please share it and help me to stamp down on Blue Badge Discrimination!!

Thank you for reading!




Friday, 8 June 2018

COPD Conference

Dear Readers,

Today I made an announcement via a video on my Youtube channel. 

I announced that I have been invited to talk at the COPD Conference in Rome!! I am so excited and honoured to be given this opportunity and I will be representing the PHA UK as their official ambassador.

I will be talking about how I live with Pulmonary Hypertension, how others live with PH in the UK and facts and statistics for those with PH in the UK. I will be working closely with the PHA UK to create a presentation for my talk at the conference. I can't wait to spread even more awareness and speak in front of around 180 heart and lung specialists from around the world!

Take a look at my video here.

Thanks for reading.


Special Announcement

Tuesday, 22 May 2018

My New Vlog Journey

Dear Readers,

Tomorrow I am starting a new online venture... I am becoming a Vlogger!!!

Due to receiving messages asking if I've ever thought about taking my awareness campaign of #PHWednesdays onto YouTube, I thought, why not?! Let's give it a go!

So here we are, my first video drops tomorrow at 13.00GMT.

Each week a video will be uploaded about Pulmonary Hypertension every Wednesday at 13:00GMT. I really hope this will be a success and I'm looking forward to my new vlogging journey! 

I would love it if you would support me and subscribe to my new PH YouTube channel and join me on this journey!

Thank you! 

#NoCureAlwaysHope


Follow the link to subscribe now - PHighter Tess



Monday, 14 May 2018

Mental Health Awareness Week



Dear Readers,


This week is Mental Health Awareness week. 


What is Mental Health? (Extracted MentalHealth)

Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act. It also helps determine how we handle stress, relate to others, and make choices. Mental health is important at every stage of life, from childhood and adolescence through adulthood.
Over the course of your life, if you experience mental health problems, your thinking, mood, and behavior could be affected. Many factors contribute to mental health problems, including:
  • Biological factors, such as genes or brain chemistry
  • Life experiences, such as trauma or abuse
  • Family history of mental health problems
Mental health can be a big issue with those who have Pulmonary Hypertension because it changes your life! From diagnosis to having to live with it every day. Emotions of grief of the loss of life you used to have, the anger of not being able to do the things you used to, the anger of having PH, the sadness, and the list goes on. That is only some of the emotions we deal with and yes living with PH is difficult!!

To help PH'ers with this, we are very lucky to have our wonderful charity PHA UK and fortunately they have partnered up with the charity Anxiety UK.


So if you are in need of support, help or someone to chat to then please SPEAK OUT!! Do Not be afraid for you are NOT alone!! This goes for anyone, PH diagnosis or not! 


PH'ers, for more information, click to enlarge photo or visit Anxiety/PHA




Wednesday, 9 May 2018

PHight Another Day

Dear Readers,


As you all know I was admitted to hospital last week due to decline of my PH. I'm doing ok and now I'm resting at home. I can not fault the Royal Brompton & Harefield Hospitals Specialist Care - the PH team there have been amazing with me and their help and swift actions are helping me through this tough time.

If I'm doing ok, I go to clinic every 3 months. When I go to hospital just for the day for clinic, people don't understand the journey, tests and clinic that I go through every time. It requires a lot of advanced transport planning due to difficulty of walking, breathlessness and chronic pain! Terry and I decided to put a video together to give people an insight of it all. Hope it gives you an understanding of clinic life for a PH'er!
Please share to continue to raise awareness. Thank you for your continuous support!

Facebook - Tess and PH
Twitter - @maritess_mt 
Instagram - @maritess_mt



#NoCureAlwaysHope