hEDS & X-Rays

Wow! Just wow! This week has been crazy!!

Monday was okay fairly normal. Get up, get kids ready, do school run, food shopping, get home put shopping away. No different to any other week. Legs and body still failing me. Same shit different week.

Tuesday, the day of my first appointment at RONH in London. This is for the Ehlers Danlos Clinic. This is my first appointment relating to my eds since I was diagnosed last year. It was when I was attending an appointment at St George’s FND clinic, we drove all the way from portchester to St George’s (67 miles one way) to find out my appointment had been cancelled without any communication to us. No letter, no text, no call not a thing! So, as we had travelled so far for a cancelled appointment that spoke with the head of the FND clinic Prof. Mark Edwards and he said that if we were happy to wait, he would see us at the end of his clinic. So, we agreed to wait, yes okay it was an inconvenience but not to bad. We got free parking; my dad had our children, so we were happy to stay.

We are waiting until the end of his clinic and then I was called in. it was in this appointment he asked me to stand, instantly he asked if I have Ehlers Danlos syndrome. I replied no. he then said he was going to contact my GP to get me checked and if it turns out I do; he strongly recommends I have treatment and my care handled by RONH in London. So here I am!

I haven’t spoken to much about my hEDS and how it affects me and what it really is. So, this week I will tell you some more!

What is Ehlers Danlos syndrome Type H?

The NHS website says ‘Ehlers-Danlos Syndromes (EDS) are a group of rare inherited conditions that affect connective tissue.’

What does hEDS do to me?

Well, for me the main way it affects me is sub-luxing joints and dislocations. I first started sub-luxing at around 6/7years old then as I have gotten older, I have sub-luxed more and more. It started with my knee in my younger years, then as I have gotten older its started to affect my left shoulder, both wrists, my fingers, both knees and my left ankle.

So today I am at one of the best hospitals in the country for Ehlers Danlos and I am hoping for some answers.

My appointment. My appointment was at 1:30pm, we didn’t go in until around 2pm. We weren’t fussed as the reason we were late going in was because the doctor wanted to fully review my file prior to meeting me. So, we head into the appointment and meet with the doctors, she instantly says that we are going to go though everything from birth. So, we go thought everything, I then get up and she moves me around, pushes, pulls, prods and pokes me. We then sit down, she confirmed that I have Hypermobility Ehlers Danlos Syndrome. We then move on to treatment and managing it better. She recommends I attend a 3 weeks inpatient program here at RONH, and also states she wants me to have another scan on my heart valve as due to the hEDS this is at risks. She also is going to contact my GP and get them to refer me to see a gastroenterologist. This is because I regularly suffer from constipation, and I also had issues with bulimia (eating disorder) when I was in my teenage years, and I have regularly bouts of sickness now requiring me to be permanently on anti-sickness medication. She thinks that my ED wasn’t actually all psychological but actually partly due to the issues with my bowls and my hEDS. She thinks that my bowl is getting so full, solid and blocked that when I eat it causing me to feel sick and then be physically sick. So, she wants me to see someone to investigate this further.

So, we leave the appointment feeling like we have been listened too, like we have been helped, like we have answers and like I actually know what’s going on and what is going to happen to help sort it out. So, Sam and I begun our drive back home. We headed straight to my dads to pick up the kids as he had picked them up from school for us and took them out for tea.

Was so happy to see my babies!

Then Thursday I had my x-ray for my left hip, this was to look and see if you can visibly see Avascular necrosis in my left hip. AVN isn’t visible on an x-ray until around stage 3. After I had the actual scan, I asked to see it. They showed me it against an x-ray I had of both hips a couple days after my right total hip replacement. Don’t get me wrong I am not trained however from what I know from how my right hip looked, it doesn’t look good. So now I just need to play the waiting game until I see my ortho consultant on March 10th. I am just praying that they don’t try and say, ‘oh we’ll just repair it.’ I want this replaced so bad! The pain is unreal. Like normal for around stage 3, the pain comes and goes. I have good days and bad days, but those bad days are really bad! So bad I cannot walk unaided at all, and I need 2 crutches as times. That’s how bad it is. Now we wait. So that’s about everything that happened!

So that's whats been going on in my personal life and with my health.

here is whats going on with the business. We are excited to announce we have new products coming out shortly. We have new items to add to our clothing range, including ladies clothing, girls and new jute bags.We wanted to add some new items to our men's range, however we are having issues with getting the stock for the new men's range. These will be coming soon. Sam and I have been working hard at getting these ready to launch these on the website.

we have also been working hard at developing a new prototype. If you follow us on Instagram you would have seen a couple photos. We are currently only on round 1 of this prototype, so we have more work to do on it. We also added new fabric, we added a zebra range i honor of Ehlers Danlos. The fabric is now available on our medication bags, walking stick padding and wheelchair cushion cover.

That's about it for now, Until next time.


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