Morning everyone 🙂
My email and instagram (@lymphosaurusrex) have been going a bit crazy this morning since an article was released in the Daily Mail about my Lymphedema Story. It makes me nervous to share my story internationally (and go beyond the safety of our little LE community here and on Instagram!) but in order to raise awareness about our condition we must be willing to take a risk and SHARE information.
Lymphedema is a very mistreated and misunderstood pathology (by doctors and the community at large), so by raising awareness of the condition we can help instigate more research, better treatments and ultimately a cure. I mean, we sent a man to the moon- how hard can it be to find a cure for Lymphedema?!
If you have found my blog thanks to the recent news articles, please find me and connect on instagram @lymphosaurusrex . There is a huge community of people who suffer from this condition that are sharing vital information and supporting each other through the daily battles of LE life.
Please share with your friends and family to spread the word further about Lymphedema!
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Lymphosaurus Rex 
Good on you Sarah! Keep up the awesome work you’re doing for us Rexes 🙂
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Hi,
I just read your story today for the very first time on news.com.au. I have had primary lymphoedema in my right leg for 20 years. It was diagnosed in 1996 when I was 26 years old.
Newly engaged at the time, I was completely shattered. But I have managed to control it over the years with MediStrumpf compression stockings. I wear them all day, every day but remove them at night for sleeping.
On long haul flights, I wear 2-3 stockings!
It has been a tough journey thus far. Living a normal life is easier said than done. I love the beach and stockings are very intrusive and uncomfortable.
I have three beautiful daughters and I hope that this condition is not hereditary. As you say, a lot of medical practitioners are clueless about this condition.
I wish you well and continued successful management.
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Hi.
I love your story and can feel your pain. I got diagnosed for Primary Lymphodema at 32 years old in both legs. I was in the fitness industry and had to change everything. I was there because I always wanted to make my legs nicer! The more exercise I did the worse my legs got!! My self esteem was the biggest problem. Why couldn’t I look ‘nice’ like I used to? My legs were the bane of my existence!!.
I am so grateful that you are brave enough to share your story. It’s a tough situation. I too believe that there is more that can be done. The best thing I ever did was get liposuction. I still wear stockings every day. My legs are a better shape even though i am no longer super fit. My knees developed cysts that could not be operated on so i have had to adapt to these limitations and leave the fitness industry. Before the knee problems I was like exercising over two hours or more a day. Only then was I happy with my legs but in the back of my mind I was like – is this a reality that you can keep up forever??
I think that life is about adapting to limitations. You are braver than me. I have not been swimming much I am not proud of my legs out of stockings. It changes summer for me totally. I used to love Perth summers swimming the beach and the pool. I know my husband misses out on how I used to be too.
I am so proud of you. You have bought a tear to my eye. Thank you is all I can say!!
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Absolutely. Thank you for sharing. I am now 40 and was diagnosed with primary Lymphoedema when i was 12. I have lived with this for a long time with not much hope…so thank you for giving me hope. I have not shown my legs to anyone in a long time and hope maybe to do this in the future. Thank you for your bravery and all of this new information.
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Hi there! I am 16 years old and I was diagnosed with lymphedema at age 11. Over the years I have chosen to ignore my situation and pretend it didn’t exist; I’ve never wanted to face the reality of it, especially as I started high school. However, recently things have progressed and not for the better. Since I have discovered your story, I am inspired to take care of my body and listen to what it needs. I am no longer going to ignore it. Thank you so much for everything you do. Cheers 😊
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Thank you for your message!! Im sure we have all gone through the “ignoring it” stage, but as we all see it just gets worse if you do that. Lymphedema is just one of those things that requires a LOT of effort to keep it under control. Somedays can be good, others can be bad. Just hang in there and start to take care of your body because you will only benefit from it. xoxoxo
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