A Quick Hello

14 Mar

Right, well this is my first ever attempt at a blog… I’ve never really known how to go about them, but here goes!

I’m not sure that how I’m going to be writing is in fact a blog, as it is more a diary of reflection – covering events in my life that are associated with my growth disorder, Pseudoachondroplasia. Either way, welcome to my ramblings!

I decided that I would write about my experiences of having Psach (I can’t keep writing the whole word, pseudoachondroplasia… it’s long!) as recently, I had the parents and grandparents of a little girl who has just been diagnosed with the disorder contact me on Facebook.  They had recently had the shock of being told their gorgeous little daughter has a growth disorder and that her life may not be the same as most other children… so naturally, they wanted to gain as much information about the condition as they could, and speak to as many others who have Psach as they could.  They wanted to know all that they could to support their daughter.  I have spoken with them all quite a bit since they first made contact and explained to them much of my experience, and I hope that this has helped them in any way possible.  However, discussing the matter with the family lead me to look for other’s experiences online… and I can’t find any! Not one person with Psach has written their experiences of the condition online (Well, not that I can find anyway!). So… I thought I’d give it a go.     🙂

I’m Ruby, I’m 22 years old, I live in England (UK) and I have Pseudoachondroplasia…

I’m not quite sure where to start from, so it’s just this little hello message for now.  I’ll write again soon!

x

p.s. If anyone wants to contact me regarding anything I post – please feel free to comment on here, or send me an email to: rubysallen@hotmail.com Or, tweet me @rubysoniaallen

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6 Responses to “A Quick Hello”

  1. Mary May 18, 2012 at 2:05 am #

    Ruby it’s little Evie’s mommy – I’m so glad we were part of your inspiration in writing this blog! I have been reading the whole thing!! Thanks for sharing your experiences.

    • rubysoniaallen May 21, 2012 at 12:56 pm #

      I’m pleased I have been able to provide you with a little information Mary! Hello to Evie from me! x

  2. Melanie W April 19, 2015 at 3:47 am #

    Hi, my husband has pseudoachondroplasia and together we have a two year old and we’re not sure yet whether she has it. Thanks so much for posting about yourself! Although my husband has his own experiences, I appreciate hearing more, and especially hearing things from a female perspective. Thanks again!

    • rubysoniaallen April 19, 2015 at 9:39 am #

      Hi Melanie, I’m pleased to hear my blog is being a help to you… That’s what it’s here for! 🙂 if you do ever need a female perspective on anything in the future, please don’t hesitate to get in contact! x

  3. Manjiri S April 24, 2017 at 10:22 am #

    Hi Ruby, my daughter suffers from the psuedoachondroplasia, she is 10 years old . She had 3 surgeries for leg straightening n now one more due this month.When i was going through your experiences tears rolled down as i could see my daughter in you but i salute your confidence and your positivity.We had also consulted for hormone injections but were told that i would be of no use in my daughters case so we didnt go ahead. M y daughter has problem in both the legs and hips .But i was not clear about the hip surgeries even that has to done after some years. We can only see my daughters pain but cant take it, we always boost her self confidence and reading to yours i really felt proud of you.
    Take care and God bless you and your family.

    • rubysoniaallen April 24, 2017 at 6:32 pm #

      Hi Manjiri,
      Thank you for your kind words, and I hope you find my blog useful in some way. I do hope your daughter’s pain improves once she’s had this next surgery – it can be tough going through it all… but I’m sure that you supporting her to have confidence will help her both now, and in her future too. If you ever would like to ask any questions about any of my experiences (or anything else you think the condition may have affected) please do contact me. Best Wishes, Ruby x

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