Getting the right support

A diagnosis of Duchenne muscular dystrophy (DMD) can turn your world upside down, but you do not have to go through it alone. Family, friends, professionals and online communities can all serve as great pillars of support and comfort to fall back on in difficult times.

Types of support

There are two types of personal support networks and you should make use of both:

support

Informal support networks1
People who help out in a practical way and are there for you when you need them, like friends and family members.

Formal support networks1,3
Support from healthcare professionals, patient groups and professional organisations.

Having a strong network of supportive people that you can trust and fall back on means that you can:

  • Get help with the practical aspects of life (for example, medications, child care, schools, home adjustments, transportation and finances)1
  • Have access to expert knowledge from healthcare professionals3
  • Join an online community so you can talk, get advice and share stories with families who are experiencing similar things to you1
  • Get reassurance and support at times when you might feel hopeless or alone1


How to build and strengthen your support network

It can be easy – albeit unintentionally – to give less time to your friends and other loved ones after a DMD diagnosis. You may find yourself busy taking care of your family, your priorities may change or you may feel too emotionally drained to see other people. However, making time to maintain your support network is critical. 

Try following these 5 steps to help strengthen your relationships with the people who matter:

Touch base often1,2
Make an effort to catch up with family and friends on a regular basis. This does not always have to be face-to-face – a simple phone call or email will suffice.

Life hack: if you are short on time, try writing out a ‘template’ email that contains all your family news. Later, you can personalise the content depending on who you are writing to.

stairs

Allow people to help1,2
It can be hard to ask for or accept support, but loved ones, friends, co-workers and neighbours often want to help. Let them know what you need, as well as how and when they can help.

Life hack: make a tick list of things that need doing. If someone asks to help, show them the list and let them choose what they can take off your hands.

Share what is on your mind1
Try to be open and honest about the way you are feeling and what you are going through. While it can be scary to say what is on your mind, it is also a pathway to a deeper connection with others.

Make time1
Meeting with family and friends is a great way of taking a break and clearing your head. That is why it is important to make it a priority and not just an afterthought when you have free time.

Life hack: try using your phone or calendar to make social event planning part of your schedule. This way, your phone will automatically send you reminders, which will encourage you to make plans.

Show appreciation1
It is important to remind your loved ones how important they are to you and how much you value their support. Make sure to express how you feel, and do things that show how well you know and care for them.

Life hack: when showing your gratitude, make sure to focus on the other person. Do something that they would perceive as caring. This could be treating them to lunch or a quick cup of coffee, writing a thank-you note, giving them an inspirational book or simply asking how they are.


Get the support you need

Unsure about where to start? Ask your family doctor to refer you to a social worker or counsellor, and take a look at the DMD support groups available to you below.

Finding a like-minded community

You are not alone facing the challenges of DMD. Within your country, there will be a number of patient organisations and groups that you can go to for more information and support relevant to your local country.

Find out what support groups are available in your country here.

Find the support you need to help live a life with DMD. Read below to find out about patient organisations and groups that you can go to for more information and support relevant to your local country

1. Mind. How to cope when supporting someone else. Available at https://www.mind.org.uk/media-a/2903/supporting-someone-else-2017.pdf [last accessed March 2021].
2. Carers Trust. Tackling loneliness. Available at https://carers.org/health-and-wellbeing/tackling-loneliness [last accessed March 2021].
3. Muscular Dystrophy Association. The diagnosis and management of Duchenne muscular dystrophy: a guide for families. Available at https://www.parentprojectmd.org/wp-content/uploads/2018/09/CareGuideForFamilies_2018.pdf [last accessed March 2021].

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