Raising Awarenesss of DDH and Hypermobility Syndrome

When your child has a  medical condition it is never far from your thoughts.  When Erin was diagnosed with ddh it was only the beginning.  Since then she has endured many operations but more than that we have endured all the what if’s.  Life changed.

What many fail to understand though is that ddh is long lasting.  Today two things happened.

I have spent the last four years campaigning. Campaigning for awareness, talking about ddh to educate others and help stop the late diagnosing that has a negative impact on outcomes.  Erin understands her condition and it still limits her.  yes, she can now run but not as far or fast as her peers.  I am regularly approached to talk about our experiences and rarely say no.  Telling our story is key to raising awareness whether that is on the national TV, print media or online media.

A few weeks ago I was approached to have a small part of our story in Pick me Up magazine. Erin has been recognised as such a good swimmer and we know that this helps her hips and joints, infact she was named as water babies little hero and we had subsequent media coverage where she was filmed swimming.

The coverage is good and I am happy with how it has been presented.  The fact box was accurate , which is always a bonus, although I wish there was some information on spotting the signs and symptoms.

The second thing that happened revolved around a letter we received today.  It reminded us why ddh still haunts us.  We are not happy that it took so long for Erin to be diagnosed.  Her hip socket had not developed, her femoral head (the ball) had no cup to sit in and therefore it grew misshapen.  For almost two years countless medical professionals  failed to spot a dislocated hip, the uneven creases, the non weight bearing and crucially the non walking were not put together.  Yet today we found out that until Erin is 12 we won’t know how much this late diagnosis has impacted on her future.  Six more years of waiting until a consultant will advise us of her outcomes.  However there will be many more xrays before this. Erin is due xrays in two months to see how much growth there has been.

Hypermobility syndrome and metatarsus abductus also impact on Erin daily and she wears orthotics to help her ankles.  The swimming helps with both of these conditions and they are all related.  Many believe that the ddh and metatarsus abductus are both packaging conditions, caused in utero which they maybe.  Erin was a big baby and she had reduced fluid, these can be factors that are seen in babies with these conditions.  Hypermobility syndrome often runs in families and we can see that there is a family link for us.  We don’t know what comes first the HMS or the DDH but for us it doesn’t really matter, she has both and has had from birth.

We just hope that the media we do and the posts I write continue to help others and to educate all about the nastiness that is hip dysplasia and HMS.

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