- Léri-weill Dyschondrosteosis
- Interviews
Shell Leigh's interview
How did all start?
I had twins early 29 weeks unfortunately lost one at 8 days and the other was constantly monitored, was found he was short stature at 9 months but nothing was done i pushed and pushed til i finally got a diagnosis when he turned 8.
Do you already have a diagnosis? How long did it take you to get it?
My son was tested jan 2019 got results in april 2019, me and 1 son was tested September 2019 and got results October 2019, my other boys were tested december 2019 and got results feb/march 2020
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've received no treatment but my son is on growth hormone and has had one operation on his wrists as he has madelungs deformity
What have been your biggest difficulties?
Managing hospital appointments round all the children as have 2 others under the hospitality too.
How has your social and family environment reacted? Have your social or family relationships changed?
Everyone is accepting and nothing has changed
What things have you stopped doing?
Nothing but im struggling more now i get achey wrists for some reason but i dont have madelungs, my back and my knees also are becoming a problem
So far, which years have been the best years in your life? What have you done during them?
I think from having my 1st son and still going as my youngest in only 8 months, so in the last 13 years ive had 7 children (had twins but 1 died at 8 days) most of the time i was looking after Billy (a twin) he had lots of appointments (still does but not as frequent) i volunteered in a charity shop and had a little cleaning job before moving for a fresh start and expanding our family.
What would you like to do if you didn’t have your condition?
Nothing has changed for me spent most of my life not knowing
If you had to describe your life in a sentence, what would it be?
A rollercoaster, plenty good and bad
Finally, what advice would you give to a person in a similar situation?
Trust your instincts, i wasnt listened to when i knew there was more than what they thought, also take each appointment as it comes, i forever got myself stressed with all appointments that came through post especially when it was several over few days for more than one of my children but learnt to put them in order stick them on fridge and deal with them that way
