Life’s twists and turns can send you skittering into different places, some light, others dark. While we cannot always offer a panacea for the darkness that sometimes engulfs us, we can provide support, medical & emotional, as well our own personal tactics and tips on combating anxiety.

This week marks Mental Health Awareness Week and we are emphasising and drawing your attention to the help, support and solace we can offer you here at the Trust - both professional and personal!

    It's good to talk, especially to someone in a similar situation. A rare illness can leave you feeling isolated and alone, following a solitary journey. But you are NOT alone. At the Marfan Trust we've started a conversation amongst our Marfan community. Peer-to-peer support is invaluable and we'd love you to join the conversation. Email us if you're interested in mentoring others or receiving support yourself.
    Our medical helpline is open to all. Understanding a medical problem gives you control so please feel free to call: 0333 0111 5256.
    We are expanding our collection of leaflets with new booklets for teachers and heart surgery. You can access a existing collection here.
    Pop in for lunchtime coffee and conversation with the Joanne and members of the Marfan Trust.  Our new series of monthly drop-ins falls on the last Tuesday of every month. They're entirely informal and free, offering you a chance to meet fellow supporters and discuss common concerns in a closed confidential environment. Book your place here.

Dr Anne Child Finds Beauty ...

In time of stress and worry I find Beauty:

Classical music (listening, and playing the piano);

Gardening- learning how to help seeds and plants grow and flower - magic! And Reading. I sometimes sit in the sun and listen to the birdsong.

 I love feeding the garden birds.

I also love to order takeaways and pretend we are in a covid-free restaurant (in our own kitchen)

 I enjoy laughing at jokes

When none of these are sufficient, ask for help with the most stressful problem from someone who can solve the problem

Dr José Aragon-Martin, Research Director

I just try to focus on something that will make my mind forget about my troubles and stress time. Movies, cycling, browsing bookshops/clothing/home improvement.

But this is just covering with sugar the problem/stress. The best is to talk to someone who will be very neutral to the issue.

Victoria Hilton, Helpline and Communications

When anxiety threatens to engulf me I instinctively do something with my hands; I create a messy meal, paint a wall, or draw a picture. This loosens anxiety’s grip, allowing my thoughts to flow more freely and lucidly. Once I've collected myself, I speak to someone close who will give a helpful perspective and some clarity of vision. Understanding a problem confers control and this is helpful when searching for a solution.

I also sometimes disappear to the cinema, my favourite occupation! I love entering a dream world and someone else's story; you can forget yourself and your troubles, albeit for only two or so hours.

Guprreet Madan Fundraising Manager

The things I do to combat stress is to first calm down, divert my attention elsewhere so that the stress doesn't consume me. The thing that calms me down instantly is to see my daughter smile, playing with her, it makes everything disappear. She gives me strength.  I might then go out for a walk or exercise (gym or I've now recently started yoga) to work up a sweat. This diverts my attention and gives me time to reflect. I also like talking to family and friends as it always helps dissipate stress and gain another perspective.

After calming down, I then look at the stress/problem at hand. I'm able to look at it calmly and practically and more often than not, I'm able to find a solution.

Joanne Jessup, Clinical Nurse Specialist

I have had times in my life at which I felt overwhelmed and struggled, particularly with anxiety. Strategies that help me deal with a busy, chaotic and unpredictable world include the following:

  • I share my worries and concerns by talking to a loved one, this invariably makes it feel less scary and usually stops all the catastrophizing that goes on in my head!
  • I write lists, by having things on paper I can plan, organise and know that I won't forget things. It gives my brain space for other things.
  • I stay active, I try and do some form of exercise regularly, a walk, a trip to the gym. I have NEVER regretted doing some exercise, only talking myself out of it. This clears my mind and makes me feel better both mentally and physically
  • I go out in nature, my children joke that I get a 'Nature Boost'. Be it a hike on the South Downs, a walk on a beach, a camping trip, I definitely get my energy from being in the great outdoors. 
  • Finally, I get in the kitchen and bake. I love the process and the end result!

The Marfan Trust is registered in England and Wales under charity number 328070 at c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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