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My name is Melanie, I am a child of God, Wife, Mother, Nan, Sister, Aunt, Great Aunt and Cousin. I have HSP with gene type SPG 10. I was in foster care when I was 6 weeks old and my foster parents adopted me when I was 5 years old. I found out in my birth family we all have HSP except one  of my sisters. IN 2019, I found out that my birth Mum, My brother and I all have the same gene type SPG 10, we are also the only ones that have been tested. I was diagnosed with HSP  when I was 38 years old.

Getting diagnosed with HSP changed my life completely.

Melanie WadeA Lady Living With HSP

I enjoy travelling from Canada to England to see my family in England. I am the only one to leave the town I was raised in, never mind  leaving the Country. Travelling is getting much harder for me to do by myself. I went to England in September 2019 by myself. My husband booked me with a wheelchair at the airport which is great, I would highly recommend this to anyone but you have to book it in advance. I used the wheelchair to push to be more independent at the gate and around the terminal. On the plane I was in a disabled seat near the bathroom so I didn’t have far to walk.

Once landed in Heathrow London , I had a wheelchair booked for me in the airport but they push you to get your luggage and then say it’s up to you to get to your ride from there. The bus depot in Heathrow,  is a long, very long walk downhill there is a moving walkway but because of me being by myself and I had a suitcase, I decided not to use it as I wasn’t feeling safe about it so I just walked very slowly to the bus depot. Once at the bus depot there are lots of seats for the disabled to sit on while waiting for your bus. The bus driver was very friendly and very helpful he also let me sit at the front of the bus which is for the disabled but because I don’t live in England I am not allowed to use those seats but he let me anyway. By the way, the bus ride from London, Ontario to Toronto is a 2 hours drive then a 71/2 hour flight from Toronto to London,Heathrow then from Heathrow to Cheltenham, the town I grew up in is a 2 hours bus ride  then 15 minutes from the bus depot to where I was staying by taxi.

The whole trip was a very emotional time away, burying my mum, seeing family, friends ,old friends. I also met with two  people who also have HSP. Coming back to Canada was different as my Cousin and her friend drove me to the airport.On  my way my hip dislocated like it does a lot. Once at the airport, I realized I could hardly put weight on my left side so I figured it’s just from being in a car too long.The friend paid for me to go into the lounge while waiting after I got a wheelchair, it was very relaxing.I got on the plane with  no problem. Half way through the flight, I felt something was wrong with my leg, so I walked around the plane. When we landed I realized I could hardly walk again so I just figured it was from all the sitting. I used the wheelchair in the airport all the way to the bus stop, the bus driver asked if i will be okay, I told him my husband will meet me with my walker when we get home.

The next day I was in a lot of pain so my friend took me to the emergency room here where they x rayed my hips and said that nothing is broke they gave me some morphine for the pain and sent me home.I woke up the next day, I could not move I was stuck in bed, my left hip was so painful I couldn’t move it i also had  major muscle spasms in my left leg from my hip down to my toe that made my leg jump and made me scream!!!! So my husband called 911. The doctor admitted me to the hospital, I was there for 5 days. During those 5 days, I lost all feeling in my leg, major muscle spasms,  lost control of my bladder, I was thinking what is HSP doing to me, I had more x rays, an MRI and lots of blood work done. They found out that because of my hip dislocating it tore muscles and ligaments in my hip, which was causing my other muscles affected with HSP to go crazy!!! I was on Morphine, muscle relaxants and anti inflammatories. After lots of prayer and support, Occupational Therapy and Physiotherapy ,I am now doing better. I just pray this will never happen to me again and Yes, I will travel to England again by myself!!!!!

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