Here at Hypermobility Connect, we like to get behind the awareness days/months that are in place for some of the connective tissue disorders people in our community are living with each day. February each year is Marfan Syndrome Awareness Month. At this point, Lucy is our sole resident blogger with Marfan Syndrome. However, we know there are readers/followers and active members of our online community who also live with Marfan Syndrome.

 

Raising awareness about conditions like Marfan Syndrome is crucial because of the potentially life-threatening symptoms that are a part of this syndrome. We would love you to join in and “Share Because You Care” this February, sharing both the blog posts and our Facebook posts. There would be a good percentage of the population out there who have Marfan Syndrome but aren’t correctly diagnosed or are entirely unaware. It’s not your job to diagnose them, but sharing information helps people recognise symptoms in themselves and their loved ones. Awareness saves lives.

What is Marfan Syndrome || Hypermobility Connect


February is Marfan Syndrome Awareness Month, and I (Lucy) want to do my bit to support the cause, so throughout the month, I’m aiming to write a blog a week about the Condition. Let’s start by talking about what it is and sharing a few facts.

 

What is Marfan Syndrome?

Marfan Syndrome is a rare connective tissue disorder, affecting around one in every 5000 people. 75% of sufferers have inherited the condition from a parent, but the remaining 25% are spontaneous mutations,  meaning there is no family link. Because Connective Tissue is found throughout the body, Marfan Syndrome can affect the whole body. The symptoms can vary among people. Some are only affected mildly, while others are more severely impacted.

 

What are the symptoms of Marfan Syndrome?

The hallmark features of Marfan Syndrome that you would hear about in mainstream media, and have been featured on popular shows like Grey’s Anatomy, are being taller than average and having a very wide wingspan (arm-span). Most people don’t know there is a myriad of other symptoms that go along with this connective tissue disorder, some of which are life-threatening,

 

The most common symptoms are usually those that affect the bones, joints, eyes, heart and blood vessels. Other internal organs are also sometimes affected.

 

If you have Marfan Syndrome, you may: (Keep in mind that you don’t need to have all these things to be diagnosed with Marfan Syndrome) 
  • Be taller than average.
  • Have extremely Hypermobile Joints (with pain and dislocations) (Common)
  • Be flat-footed.
  • Have Scoliosis (a curved spine) or another form of back problem.
  • Have a thin body type.
  • Have unexplained stretchmarks.
  • Have cardiovascular problems.
  • Have vision problems.
  • Have a high arched palate (a common feature)
  • Have disproportionately long arms, hands/fingers (common)
  • Have a protruding or sinking-in breastbone.
These are some of the more common features and symptoms of Marfan Syndrome; there are also symptoms which are more difficult to detect and aren’t visible to the naked eye. Please remember that not everyone with the condition will have EVERY symptom, some have many, others only have a few.

You can read a short piece a wrote about my scoliosis surgery & scar – one the many symptoms of Marfan Syndrome, HERE.

 

What is Marfan Syndrome || Hypermobility Connect



I’m Lucy & I was diagnosed with Marfan syndrome as a teenager. I’m an occasional blogger who often discusses life with chronic illness/health conditions. I also like coloured eyeliner and piercings. I’m from North West England. U.K.

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