Community Voices: Dominique McGinn "Living with pain, skin injuries, and cEDS."

The Ehlers-Danlos Society
The Ehlers-Danlos Society
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2021-04-28に共有
My name is Dominique McGinn, I am a Primary School teacher from Scotland. I am 25 years old and was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at age 3. My dad and younger brother also have EDS. I enjoy talking about my diagnosis and as a teacher I love learning new things and educating others about EDS. I am very creative and have found that sharing my experiences through writing stories and poems about EDS has been very comforting to me and others who suffer with EDS.
コメント (9)
  • @puiyianchan9
    You are really fortunate that you are diagnosed as early as 3 years old. I was diagnosed at age of 40...
  • @debbierevitt5744
    I'm 62, in the process of being diagnosed., I have suffered since birth. A Dr familiar with EDS picked up on it in my daughter who is 39. My mother has it also, you'll be pleased to hear she turned 98 this month. So don't rule out a long life, she has not been diagnosed, but we all passed the test.
  • @NA-cy5tc
    Love your poem ♥️ Thanks for sharing and all the best!
  • @35neets
    Diagnosis is so difficult to get but then finding there is no plan of action after is worse. I got diagnosed with HSD a few years ago and was told there are no facilities to help me in my area. I have been left to figure it out myself. When preventing deterioration and maintaining a good quality of life is so important. It seems mad that there is no support available. Great poem too.
  • @elizabethvandeventer5487
    Beautiful poem and very true! God bless you. I’ve been dealing with this for about 47 years. My symptoms didn’t show until I was about 13 or 14. I know what your going through, keep up the good fight. Good can use your testimony.
  • @mariacurtis9247
    I’m 45 and I have been seeing a chiropractor or about a year and a bit, he thinks I may be hypermobile due to different health issues I have. I mentioned what the chiropractor thought to my previous doctor and she said she will do blood tests to rule out other conditions and go from there, I then changed doctors to a practice closer to my house and mentioned what the chiropractor said as I was there regarding an issue with my shoulder and they said I can talk to the physiotherapist about it as I will be there for my shoulder. I mentioned it at my physio appointment but they said nothing and didn’t give options. I have an online exercise programme and was struggling so mentioned a few more times to the physiotherapist and she just said that the exercises should help if I have hypermobility. I said that I need to be diagnosed still but nothing is happening so will need to mention to doctors again