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Hot topics in Lipedema

Posted on 11 August 2019

This year two ladies with advanced lipedema . Or lipo lymphedema, or stage 4 Lipedema passed away. This blog is dedicated to Katia Page and Lilith Nix.  Both ladies I met through facebook support group and then through conferences.

The first question I ask is: What do you see when you see an advanced stage Lipedema Woman?  Many would say they see non compliance, obesity, health risk etc..  Since most dont even know what Lipedema is and how to treat that is one conclusion.

Here is what I see:

1:  I see our medical community not understanding nor having the means to take care of plus size let alone a Lipo Lymphedema pt.

2:  I see deep down their struggle is real, their fear is real, the loneliness the frustration of knowing where to turn for help is real.  

3:  I see clinic after clinic closing their doors to these patients.  And if they are open most therapists are lost at how to treat.  Let's face it, let's address the elephant in the room.  It is difficult to treat. It is hard work.  It is frustrating.  How do you wrap a limb of that size and keep the wrap up and effective?  How do you have time to treat the whole person.  How do you make progress when insurance only gives a few weeks.  And many patients miss their appointment why they have mobility issues.  So yes to those that treat it is a challenge to figure out how to treat.  But you dont abandon or judge a cancer patient. To them you give compassion, support even if you cant cure. This population is asking for the same respect.

 

4:  I see Lymphedema educators lecture about how unsafe it is to take these patients.  They teach gastric bypass is the answer. They teach about the frustration of compliance.  But maybe it is us that cant figure out the right tools for people to maintain.  I believe this type of education leads to fat bias and fat phobia.  And when those two biases assert onto the advanced lipedema patient.  What happens to that patient? PAIN, ANGER, SADNESS, HOPELESSNESS, GUILT, SHAME, DOUBT erodes the soul of the lipo lymphedema advanced stage.  This becomes a tragic reinforcement. If you see diet failure, then you project onto the patient. If you cant offer some hope then some will project what you see. 

5.  I see manufacturers not making compression that fits and is affordable and helps.  It's not a money maker. We need more sizing, more choices, and affordable compression.

6. I see Medical Issues that are deeper than what our naked eyes can see.  Perhaps  this person suffers from More than just lipedema? Maybe a chronic inflammation that takes lipedema way beyond stage 3.  Maybe a combination of several problems.  But we need research to figure and understand more.  Judge less be curious to understand the why!

7:  I see that all of us have so little control so we become hamsters on a viscous cycle going around and around and around but not gaining traction.  Why is that?  How can we take control and gain better perspective?

What is this message:  I'm begging our community to work together.

Hospitals get the needed equipment, for goodness sake. We need plus size cat scans, plus size MRI machines, trained therapists and time allotted for the more severe.  

Teachers. Teach about compassion. Teach about giving hope and problem solving. Teach advance techniques.

 Dont look at patients as hopeless and suggest surgery or close the doors. Look at this as an opportunity to collaborate, to learn, to teach, to provide hope even when its overwhelming.

I beg our lippy community to quit being divided.

Stage 1 be thankful where you are at to learn so early on. Reach out to the more advanced. Are you able to give support? C an you lend a hand to your neighbor?  Can you lend an ear?

Advance stages dont be envious and angry at the early stages instead become their protective mother bear, teach them what you would have wanted them to know. Nurture them and be thankful they aren't advanced as you are.  Be happy when they have small victories. Katia and Lilith were all inclusive. They welcomed all stages into their lives.

We are a small community. May these deaths give us a surge to be better advocates and better sisters.  We take these deaths and ask ourselves what can I do to make a difference?

To our therapists, our doctors, our nurses, our educators, Please advocate for our needs. Please open the door of communication.  Thank you for your skills. Thank you for not judging  Help me have hope to manage better.

Can we become a team help those out there that is scared and overwhelmed?

It's a big task. But the Katias the Liliths and even me Yvonne stage 3 Lipo-Lymphedema patient needs your support on this path.

Katia and Lilith may your bodies and souls be in a peaceful joyful and pain free state.

 

 

 

 

 

 

 

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11 comments

  • ALICE O CONNOR : August 20, 2019

    Thank you so much for info
    Alice O CONNOR

  • Martha Jeffrey : August 20, 2019

    Hi, I am new to this diagnosis and I have to say “wow”. It has taken years for a doctor to finally see that I’m not “just obese” “diet and exercise then some gastric surgery and you’ll be good as new”
    That was so disappointing that no one would hear me say that there is more to it than that! So, I’m learning bits and pieces, I am scared, I feel alone and I feel like giving up. And I cant find pants or panties to fit me :’(

  • Margaret Merritt: August 20, 2019

    Our voices need to be heard. We are active members of society. Or at least I was at one point in my life not to long ago. I want my life back I am tire of being made to feel less than. By those who don’t know what it’s like to carry this extra weight of fluid when your lymph system decides to goes awry. Not only does it affect that system of your body but, it effects my heart, kidneys, stomach and even my pancreas.
    Even my brain and thought patterns are askewed and I get angry easily. I want to be around to enjoy my grandchildren and my family. I want to be here and enjoy traveling with my husband when he retires. But, I can’t even walk to the steps of my front porch without getting winded. When will I be able to find and afford the treatments I so desperately need?

  • Sally: August 20, 2019

    Amen to all of this, but #5 really caught my attention. I am wearing stretched out compression socks from 4 years ago because the $500 price tag for them (or $750/pr if using insurance), is prohibitive. And insurance thinks 2 pairs of garments a year (when the packaging tells you to replace every 6 months), is somehow an adequate number of garments to effectively manage the condition.

    I was convinced to go for thigh high compression at one point, and I’ve never had a more miserable ting to wear in my life – constantly falling down, itchy, uncomfortable and make an annoying and attention-causing wooj wooj sound when I walk. All despite being custom fit. So I’m back to my loose knee highs. And the money spent on the thigh highs wasted. I’ve tried OTC socks which are harder to get into and cut into me in places, but may be my best (only) option for now.

    It can feel so hopeless, particularly when most places have never heard of lipoedema, and often give me the side-eye like I’m making it up. If they don’t know or even believe it exists, how can I be treated effectively? I am treated for lymphedema. Hopefully this is enough.

  • Mary: August 20, 2019

    Thank you for trying to address all the problems any lipo/lymph patients encounter every day. While I think the medical field is very slowly starting to recognize these disease processes there is still many barriers to break through. Thank you Yvonne!

  • Kristi : August 20, 2019

    I’m sorry for your loss. I’m new to your blog so I thought I’d introduce myself. I’m 44 with Stage 2 Lipedema, Lymphedema and Dercums Disease along with many maladies. It’s unfortunate that there are only a handful of Dr’s who can diagnose this disease along with providing the liposuction that we need. I’m thankful for a wonderful primary dr and will soon be fighting Medicare for my surgeries. I’m a hermit because I don’t want to run into anyone I may know. I’m so angry, embarrassed and my pride hurts. Take care.

  • Kathleen: August 20, 2019

    Great article, Yvonne, thank you! I’m so sick and tired of doctors describing me as, “well fed”. There needs to be answers, there needs to be assistance paying for care until there is a cure.

  • Julie: August 20, 2019

    Much needed today. Had a doctors appt for non lipedema and lymphedema issue and I can’t even get up on their tables! Makes me cry every time I leave an office. And don’t get me going on the chairs in the waiting area that have arms and my hips can never fit. I am stage 4 of both and trying to survive

  • Elaine Purvis: August 12, 2019

    Thank you . I needed to hear this today . I need to regain my positivity and pull up my big girl pants right now. Lose the negativity. It doesn’t help one bit. RIP my beautiful Lippy sistas. Fly high ❤❤💕

  • Lynn Dido: August 12, 2019

    I am early stage 4 lipolymphedema.
    We are being fleeced. The cists of compression, therapy, dieticians, other aids, transport. We cannot afford our own treatment costs.

    If 10 per cent of women have it, it is a greater need than just 1. Or a few. It is a massive group with voting powers and a voice. Use it

  • Sondra: August 12, 2019

    Thank you so much, Yvonne, for so eloquently putting into words what is in the hearts of all late-stage lipedema patients.

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