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<div>Maja, mother of 2 daughters in age of 3 and 6, suffers from severe stage 4 endometriosis, deep infiltrating endometriosis DIE, and a rare case of diaphragmatic endometriosis, and adenomyosis.
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<div>Her illness keeps her in continuous fear and danger of having collapsed lung and not being able to breathe. Due to many daily symptoms and many days when she lies on the couch with shortness of breath and chest pain, Maja had to stop her normal life of being supportive mother and wife. She had to stop her career as an engineer.
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<div>Because of this terrible illness, she has no more stability in her life, she can't work as before, do the daily tasks and be the mother she wants to be. Her small daughters live in continuous fear of coming back home and not seeing their mother because she can be hospitalized again.
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<div>Endometriosis is a very nasty disease that is currently seriously threatening the organs in her abdomen and chest cavity. This terrible disease has completely changed her life in the last two years.
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<div>Due to diaphragmatic endometriosis, she had a few episodes of collapsed lung (pneumothorax), treated with VATS surgery and several times with the chest tubes. Each episode is very traumatic, painful and with a long recovery. She had to spend many days in the hospital, far away from her husband and daughters. Unfortunately, Maja still has a lot of bad symptoms after the last surgery and many bad days when she is in lots of pain and shortness of breath.
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<div>Her life is on a standstill right now. Maja wishes her life stability and joy back! And we want to see the smile on her face again! With this GoFundMe, as Maja's partner, I want to stand up for her so that she can finally get the right help.
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<div><strong>A word from Maja: </strong>
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<div>Hello, my name is Maja, and I am a mom of 2 lovely girls and a design engineer by profession.
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<div>Since the age of 12, I have always been in immense pain during my periods and often missed many important happenings, because I had to stay in bed and cope with the pain. At the age of 25, I was finally diagnosed with endometriosis in my pelvic, and had a laparoscopic surgery to remove the endometriomas from my ovaries. The organs in pelvis were adhered together, causing severe pain. All these years, hormonal treatments only helped with the pain and symptoms management and not with reducing the progression of the disease. I was told that I could not have children, but luckily, I became a proud mom of two beautiful daughters, who are now of 3 and 6 years old.
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<div>My life completely changed in 2021, when I started experiencing cyclical and severe symptoms like shortness of breath, severe chest and neck pain, nausea, headaches, fatigue. In December 2021, I ended up in the ER, with fully collapsed lung (pneumothorax). After multiple x-rays, CT scans, MRIs, bloodwork, ER visits, chest tube, video-assisted thoracic surgery (VATS) and laparoscopy, and I was diagnosed with a very rare form of endometriosis called Thoracic and Diaphragmatic endometriosis and with Deep Infiltrating Endometriosis DIE.
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<div>The last extensive surgery (VATS and laparoscopy) that I had in the Netherlands (in 2021) after 2 pneumothoraxes, failed. The reason is that surgeons did not have previous experience with operating diaphragmatic endometriosis. There is a lack of expertise, in general, for this rare form of thoracic endometriosis. The residual endometriosis keeps causing severe symptoms. Therefore, I never fully recovered from that surgery. I continued to have bad days with terrible symptoms of chest and pelvis pain, shortness of breath, severe headaches and recurrent pneumothoraxes. Unfortunately, there is still very high chance for recurrence of the pneumothorax . In fact, two months ago, I had another pneumothorax while on vacation, and I ended up in the hospital with a chest tube.
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<div>I am now in 'flight or fight mode'. I cannot work. I cannot be the mom I want to be. I cannot always play with my kids and give them the best version of myself that they deserve. The worse thing is the guilt I feel towards my daughters when I can only lie in bed because of severe pain, or not having the energy or enough breath to talk and play with them. How can I explain this complex condition to my two little angels?
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<div>It's now about improving my quality of life, which at the moment is not good at all. I have many "bad" days. I can't remember what it's like to be pain and symptom free, not to stress out or to live without the fear. This is not a life! I wish my life back! I wish to have fun again, to travel, to work, and have a career. I want to enjoy time with friends and family, be the best mom on the world for my two daughters, smile again and stop living in the fear that my lung will collapse again out of sudden. My life is at standstill right now.
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<div><strong>This surgery is my hope to get my life back on track! </strong>
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<div><strong>During this very challenging journey, I really need your support!</strong>
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<div>Thank you for reading my story! I appreciate the time you spent reading this text and thank you from the bottom of my heart!
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<div>For now, I hope this fundraiser marks the beginning of a new chapter in my endometriosis journey - one that might finally mean I can take back control of my life and future.
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<div>Thank you so much for your kindness and support through my journey as an <strong>Endo Warrior!!</strong>
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<div><strong>Lots of Love, Maja &lt;3</strong>
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<div><strong>Note:</strong> Any donated money not used will go towards endometriosis research or another endo warrior who may be in a similar position to Maja.
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<div><strong>Endo awareness!</strong>
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<div>Please help Maja by donating for this surgery, and joining the fight to bring Endometriosis Awareness to the international stage. If you have a wife, a daughter, just someone you love, and they complain about pelvic pain, have days where they can't get out of bed, please don't dismiss it. It may not just be "that time of the month" or "in her head." Please take it seriously.
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<div>Our goal and hope is to pay this forward one day by spreading awareness and possibly helping other women with this challenging disease.
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<div><strong>PLEASE SEE THIS DOCUMENTARY MOVIE:</strong>
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<div>link: <a href="https://www.dailymotion.com/embed/video/k6VjKBbzpy6WESzjYz9?autoplay=1&amp;fbclid=IwAR3Qdst0jzKSvwsgibgGn8RlFyG0wYmXvh12IGfBNCZojjkfONzhXXWN6os" target="_blank" rel="noreferrer noopener">documentary movie about endometriosis</a>
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<div>This documentary film (55 min.), BELOW THE BELT, uses the personal experiences of 4 patients with endometriosis who are urgently looking for answers to their inexplicable, but often very far-reaching, serious and extremely painful symptoms, to explain the widespread problems in healthcare worldwide. From social taboos and gender bias to misinformed doctors and healthcare that is driven by profit instead of patient interests.
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<div>The film reveals how millions of endometriosis patients worldwide are being silenced and how, by fighting back, we can improve healthcare for every endometriosis patient!
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<div><strong>THIS CAN AND MUST BE DIFFERENT!</strong>
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<div><strong>The following procedures will need to be done:</strong>
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<div>-Full excision of all endometrial implants from the pelvic and abdominal side of the diaphragm by gynecologist and hepatobiliary surgeon.
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<div>-Thoracic surgery VATS to excise all residual endometrial tissue from the diaphragm and explore the thoracic cavity by thoracic surgeon.
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<div><strong>Contributions will help her to cover the cost for:</strong>
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<div>-The surgery (combined VATS and laparoscopy) and required medical treatments not covered by insurance
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<div>-Flights and accommodations for Maja and her family near the hospital in Atlanta for 3-4 weeks
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<div><strong>Endometriosis</strong> is a chronic disease that Maja will probably have to deal with for the majority of, if not the rest of her life. Unfortunately, there is no cure for endometriosis, but there is a gold standard treatment called EXCISION to improve the quality of life by removing endometriosis lesions at the root. Maja is hoping this surgery could be her life changer.
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<div>Finding a surgeon who can properly perform endo EXCISION surgeries is extremely difficult and is inaccessible to the majority of people with the disease. Therefore, symptom management is often the only available option for most patients (meanwhile, the disease will continue to progress deeper into and reduce the functioning of organs). Highly advanced surgical skills in endometriosis and multidisciplinary team approach are essential and critically important, especially in those complex cases. A well-performed excision surgery could massively improve the quality of Maja's life and will prevent endo-related complications in the future, like damages to the organs. It is currently the only way to prevent recurrence or to slow progression of the disease.
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<div><strong>Surgery needed in CEC, Atlanta, with dr Ken Sinervo</strong>
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<div>Due to a lack of expertise for this condition in the Netherlands, Maja had to look abroad. Only a few centers in the world are specialized in treating complex endo cases. Maja became familiar with Dr. Sinervo from Atlanta, Georgia. He specialized in advanced excision surgery. He also specialized in thoracic and diaphragmatic endometriosis. Endometriosis excision specialists at CEC achieve great results by properly removing all traces of disease from all locations of the body, not just within the abdomen. These great outcomes are due to the fact that the doctors at the CEC dedicate 100% of their practice to treating endometriosis patients. According to our research, they have highest experience in treating complex endo cases, and thoracic cases as well.
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<div>Maja had a consultation with Dr. Ken Sinervo. <a href="https://centerforendo.com/dr-ken-sinervo-1" target="_blank" rel="noreferrer noopener"><a href="https://centerforendo.com/dr-ken-sinervo-1" target="_blank" class="" rel="nofollow noopener noreferrer">https://centerforendo.com/dr-ken-sinervo-1</a></a>
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<div>He and his team are willing to perform excision robotic surgery through laparoscopy to check her pelvis organs, and a VATS video assisted thoracic surgery (to check lungs and diaphragm) and excise all endometrial tissue found. This is going to be a very complex surgery with difficult and long recovery.
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<div>After a year of battle with a health insurance, Maja succeed to proof that she needs this surgery. The health insurance will cover the surgery cost, but only within the Dutch market rate (which will cover only a part (1/3) of the total costs for the very expensive surgery in USA). Maja is in a rush to plan this surgery in Atlanta, as the risk of her lung collapsing again is high. She need this surgery asap, so that she doesn't lose a chance to go to CEC, Atlanta, to have it done properly by experts.
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<div><strong>Links - More info about the endometriosis and excision surgery: </strong>
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<div><a href="https://centerforendo.com/#home-1" target="_blank" rel="noreferrer noopener">Center For Endometriosis Care</a>
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<div><a href="https://centerforendo.com/lapex-laparoscopic-excisi" target="_blank" rel="noreferrer noopener">Excision surgery</a>
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<div><a href="https://static1.squarespace.com/static/55d2150ee4b0d60073fd414e/t/5ea4873af222897b8d642ccb/1587840826680/Thoracic+Endometriosis+Syndrome_is+it+as+rare+as+once+believed.pdf" target="_blank" rel="noreferrer noopener">Thoracic Endometriosis</a>
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<div><strong>Partner: </strong>
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<div>Maja was dealing with endometriosis pain and other symptoms for many years, but her surroundings did not always know. Right now, we're at a point where this become very serious but unfortunately not recognized by a Dutch healthcare system, due to lack of expertise about severe and rare endometriosis in the chest cavity. Residual endometriosis on her diaphragm still causes her to have severe symptoms, like recurrent pneumothoraxes, shoulder and chest pain and shortness of breath. Deep endometriosis nodule may also obstruct her bowels in the future, if not excised on time.
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<div>The endometriosis is progressing rapidly, and it is so difficult to seeing her like this. The most difficult for her is that she cannot be the mom she wants to be. Many days, she cannot take the kids to park, cannot do sports. Maja spent many days in the hospital in the last 2 years and she could not prepare our kids that she will not be at home, because the pneumothorax happens suddenly. Over the last two years I've seen her slide down a lot and she's lost a lot due to this terrible disease.
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<div>Her job, her hobbies and her social life have suffered greatly. Pain and recurrent lung collapses make it very difficult to have a normal life. Maja is someone who always keeps going, a real go-getter. But it does not work anymore. She is deeply saddened by that. Maja hopes that this surgery will significantly improve her life quality.
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<div>Asking for help is very difficult for Maja. When she is in pain, she prefers to shut herself up, so as not to bother anyone. And when she feels okay, she is always there for everyone, family, friends and fellow sufferers. Everyone knows her as a happy, smiling and hardworking person that wants to help everyone she can. But she cannot help herself now, and no one knows how much she actually suffers when she has bad and painful days! She suffers a lot, until the point that she cannot hide it anymore in front of our kids.
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<div>The operation will require at least three specialist surgeons; a gynecologist, thoracic and a hepatobiliary surgeon. All doctors will remove, excise all endometriosis in Maja's abdominal and chest area within their own expertise. After the surgery, Maja will likely need to stay in the hospital for 5 nights, one night of which will be in ICU. After the operation, Maja will have to stay near the hospital in Atlanta for 3-4 weeks before she can handle the journey and fly back to the Netherlands.
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<div>Maja is a person with a big heart, full of love and compassion, someone we admire so much and love indefinitely. She deserves after all these years of suffering - to be helped properly and to regain her joy in life. I believe there is a bright future in front of her with your help.
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<div><strong>Will you help make this crucial operation a reality for Maja?</strong>
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<div>Thank you all very much!
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<div>Sincerely,
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<div>Miro ❤️
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Mladena Lukovic

Anonymous

Help Maja to END ENDOmetriosis

Still €39,940 to go. Help us build momentum.