Meet Lara Bloom:
Lara Bloom is the international Executive Director of the Ehlers-Danlos Society where she is responsible for raising awareness of rare and invisible diseases, including Ehlers-Danlos.
She works to raise funds for research and speaks at conferences all over the world, lecturing medical students and professionals, and supporting specialists in the EDS field by offering her experience as a leading patient expert.
Lara is also a member of the Patient Empowerment Group for Rare Disease UK, and the Rare Disease International Patient Advocacy Committee, and serves on the steering committee of the International Consortium for EDS and Related Disorders.
Before working with the Ehlers-Danlos, Lara was a photographer. She still enjoys taking pictures whenever she can. She lives in London with her wife Christina and their fluffy, white dog, Ripley.
For those reading who are unfamiliar with Ehlers Danlos Syndrome (EDS), what is it? How do you get it? When did you know you had it?
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They’re generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. There are 13 different types of EDS and we know the genetic mutation for 12 of them.
For the type I have, which is also the most prevalent form (hypermobile EDS), we do not yet know the genetic cause. It is assumed I was born with the condition as my sister also has been diagnosed and it is thought to come from my father, although he is far less symptomatic. Looking back, there were signs of something unusual from a very early age but I remember being symptomatic from the age of 11. It wasn’t until I was 24 years old though that I finally received a diagnosis.
How did you initially feel about your diagnosis? What treatment options (if any) are there for EDS? What’s the prognosis?
When I finally got my diagnosis I was relieved. I had spent years having unsuccessful surgeries, being told I was a hypochondriac and not being believed or understood. Although it’s never nice to be told you have a chronic condition, it is better than not being believed and validated. Once you know what is wrong you can begin to come to terms with it and work on the best ways to manage your symptoms.
The frustrating thing with EDS is that sometimes the pain and fatigue is so overwhelming that it’s impossible to move, however the worst thing you can do with EDS is to stop moving. De-conditioning is the quickest way to start spiraling downward and then everything becomes harder.
The key is to keep your muscles as strong as possible, whilst respecting your diagnosis. It’s easier said than done when you are living with chronic pain, fatigue, and a myriad of other comorbidities.
What are your current physical challenges and how do they impact your everyday life?
My right leg is what currently gives me the most pain. I have a labral tear and a tear in my glute which has calcified. I have been told to use a stick or crutches, however then you get weaker, and the pressure also makes my neck worse and I also have fused wrists so that hurts too!
I am managing it with physio and closed chain exercises at the gym four times a week. Those activities are keeping me strong and helping me to avoid surgery, which is very unlikely to work. I am in pain everyday though, and that in itself causes more fatigue and things like my autonomic symptoms to increase.
What’s one of your coping mechanisms for dealing with chronic pain?
A positive mind. I live using the law of attraction. I see it proven everyday the way I live my life. It is not for everyone, but for me it changed my life. When I don’t do it – I hurt more.
I affirm daily, I am grateful for what I have and don’t focus on what I don’t, or can’t have. I try and treat everyone the way I would like to be treated and I am always very driven and optimistic.
I think when people have been told for much of their life that their very physical problem was in their head, to then be told that the way to manage it is through your head is almost unthinkable, but unfortunately that is the reality. There is currently no medication or treatment, although there are lots of management tools you can use, and things like CBT (cognitive behavioural therapy) can make a huge difference.
Some people in the community get frustrated with me saying things like staying positive and keeping strong helps. They think I am saying it is a cure or treatment for EDS. It is not. There is no cure for EDS. I still have bad days, I still have pain. But this makes it more bearable, and it works – for me. That’s all I can say. If others try it and it works for them too then that’s wonderful and makes it all worth it.
I couple this with a clean diet, drinking lots of water, and keeping my muscles as strong as possible so that they can do the job my tissues can’t. Another huge difference in my life has been taking high dose vitamins. I have two immune deficiencies that have made me very ill over the years with pneumonias and recurrent infections. I started a trial in 2011 taking high dose Vitamin C, B12 and D and I have not had an infection since! It helps with connective tissue, pain and fatigue and it really has totally changed my life.
Tell us about the Documentary, “Issues with my Tissues – The Lara Bloom Story.”
It was an amazing experience that I will never forget! It was such a learning curve for me to really see the difference having strong muscle has on EDS. Prior to doing this I had severe muscle wastage and had never walked more than 2 miles. This showed me how much more we are all capable of and my quality of life has improved since doing it.
I certainly would not recommend people going to the lengths of a marathon – I fractured my foot half way through and took a long time to recover – however the concept of building muscle and keeping active is something I will do now for the rest of my life.
I think the best thing to come from it is giving people something that they can share with their family and friends to help them understand what it is to live with EDS, I am so grateful for the wonderful messages people have sent since it was released.
What do you wear that makes you feel confident?
Probably a good pair of jeans and a t-shirt so I can get my (multiple) tattoos out!
Favorite non physical activity?
Reading and watching movies.
A Little Life – Hanya Yanagihara – AMAZING BOOK!
Personal motto or favorite quote?
If we did all the things we are capable of, we would literally astound ourselves. Thomas A. Edison
(I even have it tattooed on my leg – I got it after completing the marathon with the date and the time I finished!)