This blog aims to share our experience of going through pregnancy with hypermobility ehlers danlos syndrome (hEDS)
Hi, I'm Claire, I'm 34 years old and I have ehlers danlos hypermobility (hEDS). I was diagnosed in 2013 however had around 10 years of investigations and potential other diagnoses prior to this.
I am married to the fabulous Rus and our only dependent for the past 5 years has been a guinea pig called Dangermouse! At the time of turning this blog into more than just some video snippets from my phone, and scribbles in a diary, I am 22 weeks pregnant. It has been challenging at times in terms of both the physical and well-being aspects of growing a human whilst having hEDS, so after some inspiration from Debbie and Jenna (you'll read about them later), I thought it might be useful for others to see what this looks like. I've been quite nervous about doing this but I think it would have helped me to read someone else's so if I can help one person then I'll be pleased. Ehlers-danlos syndromes (EDS) are a group of rare conditions that affect connective tissue. If this is new to you, you can read more about the different 'versions' of ehlers danlos here at NHS Choices. This page provides some background to my condition, how this affects me, my husband and our changing life. To follow the blog itself, click on the 'Blog' tab at the top of the screen. |
What does hEDS actually mean for me on a 'normal' (ie. non-pregnant) day? |
So what does this mean for me during pregnancy? |
Hypermobility EDS (hEDS) means that I experience the following:
* Joint hypermobility * Loose, unstable joints (my knees 'sub-lax' (partially dislocate) on occasion) * Joint pain and clicking joints * Fatigue (extreme tiredness) * Skin that bruises easily * Wounds that are slow to heal * Digestive problems such as heartburn and constipation * Palpitations (I do NOT have the cardiac version of EDS however stay clear from caffeine). * I do not have problems with mitral valve prolapse, organ prolapse, or problems with bladder control which are typical of this type of EDS. * I have asthma and am unable to take anti-inflammatory pain killers (eg ibuprofen) which you might normally take to reduce any inflammation within joints. Management...There is no cure for this disease / illness. The main treatment is about improving muscle strength and fitness to protect joints. Over the years I have been doing a number of classess at Bannatynes Norwich where Rus and I are members: mainly bodybalance, spin classes and free weights.
It's important if you are reading this, you understand that I actually consider myself fortunate as I 'only' have hEDS. Yes it's tough even on 'normal' days, but there are ways you can manage it (mostly). As you'll see in some of the videos, the pain in my joints can be really debilitating at times but I want to show through this blog that there are ways of managing the pain in different ways. I also believe its really important to take some control over the things you can change; accepting responsibility for this; accepting that there are things which you can't change; and the ability to choose to stay positive. |
The increased laxity of tissues can and has presented increased and additional issues; the list below is classed as 'typical' and I have selected those which have affected me so far in pregnancy and are either new, or exacerbated compared to normal...
Blue blocks = yes / White blocks = no or not yet AimsMy aim is quite simply to be able to keep walking without crutches or further assistance throughout the pregnancy. If I do need extra support, then the aim will be altered to 'to keep moving in whatever way I can'.
Acknowledgments
The following people and organistions have helped / are helping us through this chapter and I can never thank them enough for all the kindness, support and care they have shown:
Babyfit Norwich: Debbie Bagley - Pregnancy Yoga Class http://www.babyfit.me.uk/ The Powder Room Physio: Jenna Sweeney https://thepowderroomphysio.weebly.com/ The James Paget University Hospitals NHS Foundation Trust Antenatal Department, Central Delivery Suite and Community Midwife Teams http://www.jpaget.nhs.uk/ Twitter: @JamesPagetNHS Norwich Practices Health Centre, Rouen Road, Norwich http://nplhealthcentre.co.uk/ Twitter: @NGHCGP |
"There's something incredibly important to pack in your hospital bag, and that's your breath" (Debbie Bagley, Babyfit Norwich - also now known as my Yoga Dumbledore!).