Erin McGrath

Charity

The Hypermobility Syndromes Association
The HMSA aims to provide support and information to those affected by the Syndrome and to promote knowledge and understanding within the medical community and the public at large. We hope to assist sufferers to come to terms with the HMS and the distress that it can cause. The severity of the effects of HMS varies with the individual: some have few symptoms others are severely affected. HMS is an 'invisible illness' and because of this we can look well to the outside world but are often in severe pain. Moreover the nature of hypermobile joints combined with frail tissues means that we are prone to injury when performing simple everyday tasks. This opens us to skepticism, particularly by those in the medical profession who know little about HMS. The pain, stress and frustration can lead to depression: thus depression can often be mistaken as the cause of the illness, not a result of it.


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Erin's 2017 Swimathon of 1.5km non stop

Fundraiser: 
Erin McGrath

My page: http://uk.virginmoneygiving.com/Erin2017

Erin was diagnosed a number of years back with a rare genetic change known as Spondyloepimetaphysealdysplasia with Joint Laxity (SEMD-JL)

It comes about as a result of sequence variants in the KIF22 gene. It is a very rare condition as a whole, but takes on board many recognised associated conditions as part of its overall dimensions. It has many characteristics that manifest themselves. SEMD-JL can be characterised by short stature, progressive knee malalignment, generalized ligamentous laxity and mild spinal deformity. It is a distinctive form of skeletal dysplasia characterized by (in some cases) severe dwarfism, generalized articular hypermobility and progressive spinal malalignment.  The condition is linked to and has in common with the following: Ehlers Danlos Syndrome, Hypermobility and Hypermobility Syndrome, Perthes Disease.

Erin herself has suffered from the kneel malalignment which has been successfully rectified following surgical intervention where a metal 8 plate was inserted to correct the platelet growth and to realign the joint. She has also had an ankle operation to deal with a bone abnormality. She suffers from extreme flat foot and quite severe instability within the ankles and feet due to displacement of the bones (again due to joint laxity). She wears some specialist insoles to make corrective measures as well as needing to wear condition appropriate footwear. She has undergone corrective measures and long term treatment for Swan Neck deformity of her finger joints. At a very early stage it was noted that she also suffers from Perthes but no corrective action has been taken in this area as the hip joint seems to be functioning reasonably presently.

A few other side effects that come about from it are things such as very fast muscle wastage. Issue with joints locking up and constant management of joint pains and joint/muscle fatigue. There is a greater likelihood of Digestive system problems which need active monitoring. There is also a greater tendency towards anxiety issues.

Erin is always a very happy child and seems to tackle her challenges well. She remains very active with her swimming and enjoys cycling and being in the outdoors walking and rambling when time allows. Swimming has proven to be a fantastic way for her to deal with her condition and is something she really enjoys and excels at. When not swimming or enjoying the outdoors she is a keen bookworm and has also discovered that she has a talent for drumming!!

Hi, thanks for visiting Erin's page. Through Virgin Money Giving, you can sponsor me and donations will be quickly processed and passed to Hypermobility Syndromes Association (HMSA- see link on the left hand side). Virgin Money Giving is a not for profit organisation and will claim gift aid on a charity's behalf where the donor is eligible for this. I really appreciate all your support and thank you for any donations.

Recent donors

07.05.17 Well done Erin!

07.05.17 Well done Erin, that's an awesome job you've done!

03.05.17 Offline donation from Auntie Margaret and donation from Steve L

03.05.17 Well done Erin, you are a star ,-) xx

02.05.17 offline donations passed on

26.04.17 Well done Erin!

08.04.17 Well done Erin.

08.04.17 Well done Erin, we are super proud of you -)

08.04.17 Well done Erin on completing your challenge , what a fab time you did it in ! Love from Laura , Ricky and Evan xx

07.04.17 Good Luck with the swim Erin, lots of love Mandy, Charlie & Oli x

06.04.17 Good Luck Erin!!!

02.04.17 Good luck and enjoy it xx

01.04.17 Good luck Erin!

26.03.17

19.03.17 A brave young lady. We all love you Erin. Xx

13.03.17 Good luck Erin

13.03.17 Good luck Erin!

13.03.17 Best of luck, Erin.

12.03.17 I know Erin when you have a goal in mind, you give everything, to ensure you achieve. I will be thinking of you on 8 April. Good luck

09.03.17

09.03.17 Hi Erin Hope all goes well and enjoy it.

09.03.17 Good luck Erin, and well done for being so enterprising.

09.03.17 Good Luck Erin, your Dad is very proud of you!

09.03.17 Good luck Erin!

09.03.17 Good luck

£622.00

Running total

Target:
£475.00
Total raised incl. Gift Aid:
£712.75
Total donors:
38
Last donor:
Sandra
07.05.17  
Offline fundraising:
£0.00