Rowena’s Story of Life with Myotonic Dystrophy

My cousin Rowena, from Belfast, Northern Ireland has a form of Muscular Dystrophy – this being, type one Myotonic Dystrophy (DM1). She is classed as disabled. It is a “multi-systemic disorder that can affect all age groups.” –

This is different to the majority of disorders in the way that it requires a much more sizeable method in order to cater with those who suffer from it. People’s muscles are slow to relax after they have tightened.

Myotonic Dystrophy affects several parts of the body including:

  • Brain
  • Eyes
  • Immune System
  • Hormones
  • Respiratory System
  • Cardiovascular System
  • Skin
  • Genetics
  • Gastrointestinal System
  • Muscle
  • Reproductive System
  • Congenital and Juvenile-Onset

Myotonic Dystrophy doesn’t only affect hands and ankles but it can also affect the rhythm of your heart if you suffer from the condition.

There aren’t enough foundations that support Myotonic Dystrophy

It has come to my attention that there aren’t enough foundations in the world which support this unfortunate health condition. The Myotonic Dystrophy Foundation (MDF) is based in San Francisco. Although it is the world’s largest organisations which aims to focus on Myotonic Dystrophy, its mission of “Care and a Cure” and excellent research development is praise worthy.

In addition, it is valuable to mention that, the foundation has nine partners including IONIS, Nation Institutes of Health and CDC. However, the foundation cannot cater (to its full potential) for each individual who is diagnosed. People can share their experiences and talk to others who have experienced Myotonic Dystrophy. There are equipment grants available and e-learning facilities at educational institutions – for some not all.

For example, for my cousin and I am sure, for others, it can be difficult to seek the necessary life insurance. This is a shocking concern. Whilst it is not always affordable, the cost ranges and in most cases, is dependent on whether your circumstance is moderate or severe. Such severe cases are known to be declined due to a poor diagnosis. Although, the struggle still continues for eligibility.

Finding life insurance when you have Myotonic Dystrophy

What’s more, a particular life insurance party or such foundations which have been/are mentioned in this post, do not always give the adequate amount of life insurance. By this, I mean that the insurance offered will not protect a DM sufferer entirely due to low funding. Some people do not realise the huge effects it can have on everyday life and the future risks.

For example, muscle tissues and cells die with this disease along with a lack of coordination. Also, you should know that as there is no cure for Myotonic Dystrophy. You can find discussions via the Myotonic Dystrophy Support group here. According to them, around 1 in 8000 people suffer from this condition. The exact cause is unknown, however, there is a correlation with a genetic change being responsible. Similarly to Rowena and my uncle who suffers too.

More information and a message from Channing Tatum

Channing Tatum shared his compassion for DM sufferers – with one in particular named Eric Wang. Just like Eric, people want to make the most of life. Please can you help spread awareness? There are many people of different cultures and ages who need your help. Just like Channing Tatum says, “We all need to join forces to help find a solution.” And together we can.

Rowena wants to find the right life insurance for her, like many of us do/will in the future. She would be eternally grateful for any support or advice you can offer.

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