DIAGNOSIS – WHAT DO WE DO NOW?
DIAGNOSIS – WHAT DO WE DO NOW?
The first few days, weeks and months after a diagnosis of Duchenne can be overwhelming and distressing as you try to understand and absorb this diagnosis and learn everything you can. We hope we can offer some comfort in the knowledge that we are here to share your journey. You are not alone.
No one will ever forget the day of diagnosis. Everything in your world changes forever, and yet so much will stay the same. Families find themselves grieving for things that are not yet lost, grieving for the futures they thought their child had, you may feel like you have no control. Grief can be all consuming and exhausting.
When your child or children are diagnosed with Duchenne, it affects not only the immediate family – parents and siblings, but also grandparents, extended family members and friends. Coping with other people’s distress as well as your own, can be extremely difficult. Everybody copes with difficult situations differently, it is important to recognise and accept this in partners, siblings and other family members. There is no right or wrong way to feel at this time.
There is HOPE and Save Our Sons Duchenne Foundation is here to provide the ‘stepping stones’ to ensure that you have informed choices and access to information and resources throughout your family’s journey.
The first few days, weeks and months after a diagnosis of Duchenne can be overwhelming and distressing as you try to understand and absorb this diagnosis and learn everything you can. We hope we can offer some comfort in the knowledge that we are here to share your journey. You are not alone.
No one will ever forget the day of diagnosis. Everything in your world changes forever, and yet so much will stay the same. Families find themselves grieving for things that are not yet lost, grieving for the futures they thought their child had, you may feel like you have no control. Grief can be all consuming and exhausting.
When your child or children are diagnosed with Duchenne, it affects not only the immediate family – parents and siblings, but also grandparents, extended family members and friends. Coping with other people’s distress as well as your own, can be extremely difficult. Everybody copes with difficult situations differently, it is important to recognise and accept this in partners, siblings and other family members. There is no right or wrong way to feel at this time.
There is HOPE and Save Our Sons Duchenne Foundation is here to provide the ‘stepping stones’ to ensure that you have informed choices and access to information and resources throughout your family’s journey.
UNDERSTANDING DUCHENNE
Understanding your child’s condition is empowering. It can help both you and your child feel more in control of the condition and the impact on your child’s life and on your family. It will also help you to be a good advocate for your child in accessing the best possible medical care.
The ‘What is Duchenne’ page on the this website is a great place to start understanding Duchenne, and please also see below for links to other good sources of information.
WHAT CAN I DO NOW?
Every boy (and rare girl) with Duchenne is an individual and we cannot tell you exactly how their journey will be. Some may not crawl, walk or talk as quickly as other children the same age. BUT many with Duchenne will reach these milestones at the same time as their peers.
Living with Duchenne requires active participation from health care providers, parents, siblings, extended family and schools to ensure that each child thrives. We do know that the best available care at present is a combination of services and therapies. Some of the important information and services you should be aware of after diagnosis are listed below in alphabetical order:
TALKING WITH CHILDREN
Most parents worry about what to say to their newly diagnosed child and siblings. This is a difficult area to offer advice on. What you do say will depend on your child’s/children’s age and level of understanding. Some people like to use the full term – Duchenne muscular dystrophy, others simply refer to it as Duchenne. What is important is to try to make sure that what you say is truthful and makes sense to your child.
You may choose to say something like “The doctors have told us that your muscles are weak which will make it hard for you to do some things. There are lots of people around the world working really hard to find ways to make this better. There isn’t any medicine that will fix it at the moment, but there are a few things we can do that will help (i.e steroids, stretching).” Try to keep focus on the here and now – what it all means in the short term. Avoid looking too far ahead into the future. Keeping it simple and honest, without being scary, is a good start. You can then build on this information slowly as they start to ask questions. Be open and approachable. It is important that children feel that it is OK to ask you questions about Duchenne – sometimes you may not know the answers – and that’s Ok, you can always find the answers and talk about it later on. There is no right or wrong way to approach these discussions. You know your children best – do what feels right for you and your family.
TALKING WITH CHILDREN
Most parents worry about what to say to their newly diagnosed child and siblings. This is a difficult area to offer advice on. What you do say will depend on your child’s/children’s age and level of understanding. Some people like to use the full term – Duchenne muscular dystrophy, others simply refer to it as Duchenne. What is important is to try to make sure that what you say is truthful and makes sense to your child.
You may choose to say something like “The doctors have told us that your muscles are weak which will make it hard for you to do some things. There are lots of people around the world working really hard to find ways to make this better. There isn’t any medicine that will fix it at the moment, but there are a few things we can do that will help (i.e steroids, stretching).” Try to keep focus on the here and now – what it all means in the short term. Avoid looking too far ahead into the future. Keeping it simple and honest, without being scary, is a good start. You can then build on this information slowly as they start to ask questions. Be open and approachable. It is important that children feel that it is OK to ask you questions about Duchenne – sometimes you may not know the answers – and that’s Ok, you can always find the answers and talk about it later on. There is no right or wrong way to approach these discussions. You know your children best – do what feels right for you and your family.
SOURCES OF RELIABLE & TRUSTWORTHY INFORMATION
While the internet can be a source of good information, it can also be a source of inaccurate and misleading information and false hope. Rely on your Neurologist for expert and professional advice.
Save Our Sons Duchenne Foundation has a wealth of information on its website and there are also many other patient organisations around the world providing useful and up-to-date information such as:
SOURCES OF RELIABLE & TRUSTWORTHY INFORMATION
While the internet can be a source of good information, it can also be a source of inaccurate and misleading information and false hope. Rely on your Neurologist for expert and professional advice.
Save Our Sons Duchenne Foundation has a wealth of information on its website and there are also many other patient organisations around the world providing useful and up-to-date information such as:
USEFUL RESOURCES INCLUDE:
More infomation on sevices in your state & View an online guide for families