ISLAMABAD, Jan 15 (Online|): Dancing on social media helped Allison Jacobs celebrate her body as she recovered from an eating disorder. It’s also where she learned about lipedema.<\/p>\n
Growing up, Allison Jacobs knew her body looked different.
\n\u201cI was always a thicker child, and it was confusing to my parents because I didn\u2019t eat differently,\u201d Jacobs, 41, of Tampa, Florida, tells TODAY.com. \u201cI had really muscular thighs. \u2026 They were getting bigger and very (out) of proportion to my torso.\u201d
\nThroughout her life, doctors told her to lose weight, but it didn\u2019t seem to change how her body looked. Then someone on social media told her about lipedema, a condition where people develop abnormal deposits of fat tissue under their skin, according to the Lipedema Foundation. Eventually, she was diagnosed with it. <\/p>\n
\u201cI was so shocked that I had gone my whole life, and no one ever brought this up,\u201d she says. \u201cThere was such a focus on my body. I was going to doctors at such a young age, doing diets at such a young age, and it\u2019s like, \u2018How come nobody knew about this?\u2019\u201d
\nJacobs has started undergoing surgery to treat her lipedema and shares her journey on social media to educate others about the under-recognized condition.<\/p>\n
\u201c(I) want people to know about lipedema and about all of the things that come along with the disease,\u201d she says. \u201cI want people to understand the emotional roller coaster that goes along with the disease.\u201d
\nUnusual weight gain leads to pain
\nAs a child, Jacobs started dancing, and that meant there was \u201ca lot of focus on (her) body at a very young age,\u201d she recalls. Her thighs developed in such a way that they seemed disproportionate to the rest of her body. She always noticed how much volume she had around her knees. Sadly, others spotted it as well, and in middle school a boy taunted her by asking, \u201cWhere are your knees?\u201d
\n\u201cI stopped wearing shorts,\u201d Jacobs says. \u201cThe onset (around puberty) is at the worst time in a female\u2019s life. \u2026 You\u2019re always comparing yourself and looking at other people.\u201d<\/p>\n
Doctors told her to lose weight. But it didn\u2019t work. This cycle continued throughout childhood and into adulthood.
\n\u201cEven at my thinnest, my legs were always just big,\u201d she says. \u201cThroughout trying to lose that weight, eating disorders developed, mental health (worsened), like severe depression. \u2026 I was in a really bad place for a really long time.\u201d
\nBy the end of 2019, she was in recovery for her eating disorder and resumed dancing again. She started sharing it on social media to celebrate her body. Soon followers asked if she had lipedema, and she began researching it. She asked her doctors about it.
\n\u201cThey didn\u2019t know what it was,\u201d Jacobs says. \u201cThey looked at me like I was crazy.\u201d
\nAfter some research, she found Dr. David Amron, a lipedema specialist in Beverly Hills, California. Jacobs made a virtual appointment to learn more about lipedema.<\/p>\n
\u201cI just wanted to know about the disease,\u201d she recalls. \u201cHe did diagnose me. He\u2019s like, \u2018You absolutely have it.\u2019\u201d
\nAt the time, Jacobs didn\u2019t experience much of the pain that can come with lipedema, so she wanted to understand other treatment options before surgery. She spoke with her other doctors, including her vascular surgeon, who’d treated her for deep vein thrombosis. Again, they didn\u2019t seem to know what lipedema was or acknowledge she could have it. This led to a relapse of her eating disorder.
\n\u201cIt made me think that this wasn\u2019t a real disease,\u201d she says. \u201cI was confused and frustrated.\u201d
\nSoon, she began experiencing more pain. At first, her knees made it difficult for her to spin when she danced. Then walking through the theme parks with her children caused her hips, knees and ankles to ache.<\/p>\n
\u201cIt was because of the disproportionate weight caused by the lipedema and the pressure on my joints,\u201d she says. \u201cAll of this stuff was so normalized because I have only lived in my body. I only have my lived experience.\u201d
\nJacobs soon realized that she would need to undergo surgery. While excited, she also felt overwhelmed knowing she would have to fly across country and recover in a hotel while her two children stayed at home.
\n\u201cIt\u2019s daunting,\u201d she says. \u201cI\u2019m also very excited. \u2026 I can\u2019t wait to feel what it\u2019s like to dance again.\u201d
\nLipedema and its treatment<\/p>\n
Early in his career, Amron, a dermatologic surgeon, began focusing his practice on tumescent liposuction, a type of surgery where patients do not undergo general anesthesia for the procedure, so it’s considered \u201csafer,\u201d he says. Other doctors began referring difficult cases to him where patients needed liposuction on their calves and ankles. That\u2019s when he began looking into lipedema.
\n \u201cLipedema is a fat-storage disease that\u2019s very under-recognized around the world,\u201d Amron, who founded Advanced Lipedema Treatment, tells TODAY.com. \u201cIt will typically begin presenting right around puberty or the teenage years. It does affect about 10% of the population with varying degrees, and it progressively almost always gets worse in a person\u2019s lifetime.\u201d
\nArmon says that while it was identified in the 1940s, it has become \u201cforgotten.\u201d Very few doctors know about it because it\u2019s lumped together with other fat-storage conditions during medical school. Lipedema occurs more often in women than men, and its onset coincides at a time where children feel more self-conscious about appearances.<\/p>\n
\u201cFor the most part, it\u2019s pretty much unresponsive to diet and exercise, and people learn that. They … lose weight and diet and eat less and exercise more and it doesn\u2019t change,\u201d he says. \u201cAdolescents and young girls are commonly shamed and blamed. They develop a lot of guilt and many have eating disorders because of it.\u201d
\nThere are stages of lipedema from one to four, with one being the least severe and four being the most. While it doesn\u2019t seem to shorten one\u2019s lifespan, it does impact quality of life.<\/p>\n
\u201cIt begins to affect mobility,\u201d Amron says. \u201cI would say that 35% of patients that I see for consultations have had orthopedic surgery, orthopedic issues, because of all the congestion around the joints.\u201d
\nAmron feels encouraged that more research into lipedema has started over the past decade and hopes that this will better help patients. Ideally, he hopes that doctors become more aware of this condition so they can diagnose it when patients are younger.
\n\u201cWe need to really be diagnosing it early, in the teenage years,\u201d Amron says. \u201cAnd starting on preventative measures and those things primarily revolve around compression therapy, compression garments to prevent the swelling.\u201d
\nLiposuction is the \u201cultimate treatment for lipedema.\u201d
\n\u201cThere\u2019s specific considerations for the more advanced patients, but it involves typically a series of strategic surgeries in patients to target exactly where the lipedema is in specific ways,\u201d he says. \u201cYour average patient needs between two and three surgeries for complete correction.\u201d<\/p>\n
Lipedema \u201cvery rarely comes back after the surgeries,\u201d he adds. While many insurances do not cover the costs of the procedures, Amron says some recently have offered to pay for it.
\nFor Amron, seeing the mental transformation of his patients feels rewarding. \u201cIt\u2019s a really emotional journey for these patients,\u201d he says. \u201cI see something every day that hits me.\u201d
\nLife after her first surgery
\nIn the middle of December, Jacobs underwent her first surgery and Amron removed 8.2 liters of tissue from Jacobs\u2019 thighs.
\n\u201cIt blows my mind,\u201d she says.<\/p>\n
The early days of recovery felt tough. The procedure was out-patient, so afterward, she and her husband stayed in a hotel. She needed to wear compression garments unless her bandages were being changed, which could be extremely painful.
\nHer first post-surgical shower took a scary turn when she passed out, which can happen due to shifting fluid in the body and lack of compression. Her husband watched as her eyes rolled into the back of her head, and she became unresponsive. But Jacobs knew that fainting could happen, so she had her husband with her the entire time during early recovery, as was recommended. Luckily, it never happened again.<\/p>\n
Around day 10, Jacobs felt more like herself. \u201cI was walking better,\u201d she says. “The pain was much better.”
\nAs part of her recovery, Jacobs underwent lymphatic drainage massage, a type of light massage that encourages the lymphatic system to move, and that helps her still as she heals. Grappling with how her body has changed has been challenging at times.
\nAfter working for years to love and appreciate her body, she says she’s now wondering, “How do I love and appreciate this body without thinking that the other both was less than?” she says. \u201cIt\u2019s like I was cheating on my old body.\u201d
\nShe can tell that her knees have changed. She no longer has pain, and she sees that her pants don\u2019t cling to them like they once did.
\n\u201cMy body showed up every single day and it still shows up for me through this recovery,\u201d she says. \u201cI\u2019ve just become even more appreciative of my body.\u201d<\/p>\n
Jacobs has danced since her surgery and feels impressed by how much more agile she is after just one procedure. She looks forward to seeing how much more she can move after her upcoming two surgeries. The next procedure will focus on removing tissue from her torso and pelvic girdle and the last one will be her calves and arms.
\nJacobs feels passionate about sharing her story to help others who might be living with lipedema.
\n\u201cI knew something was wrong. I knew something was different, and I was just repeatedly told over and over again that it was my fault,\u201d she says. \u201cTo be able to share my experience and reach (others) \u2026 it\u2019s healing my inner child.\u201d <\/p>\n","protected":false},"excerpt":{"rendered":"
ISLAMABAD, Jan 15 (Online|): Dancing on social media helped Allison Jacobs celebrate her body as she recovered from an eating disorder. It’s also where she learned about lipedema. Growing up, Allison Jacobs knew her body looked different. \u201cI was always a thicker child, and it […]<\/p>\n
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