Please help Chilly beat Endometriosis

Dear family, friends and friends of friends,

Our dearest Chilly, Chiletso, Maggie is scheduled to have surgical procedure in the US at the beginning of 2019 after quietly suffering the pain and effects of Endometriosis for all of her adult life.

About Endometriosis 
Endometriosis is a chronic disease that is not very familiar to the general public yet it affects as much as 10% of women world-wide. It is also one of the most misunderstood illnesses  within the medical community. Endometriosis occurs when bits of the tissue that lines the uterus (endometrium) grow on other pelvic organs, such as the ovaries or fallopian tubes. Outside the uterus, endometrial tissue thickens and bleeds, just as the normal endometrium does during the menstrual cycle. Endometriosis  causes a tremendous amount of pain, inflammation, organ dysfunction, bowl or urinary disorders, infertility, extreme fatigue, and so forth. In Oct 2018, the NHS (National Health Services) listed Endometriosis as one of the 20 most painful conditions that are excruciatingly painful that they can lead to severe debilitation preventing a person from performing their daily activity.

Many women are dismissed by doctors who claim their pain is “normal.” As a result, it takes an average of 8-10 years to get diagnosed. Once diagnosed, a woman faces an uphill battle to find proper treatment. Most regular physicians will prescribe some form of hormonal treatment, including the pill, to “suppress” the disease. This does not work. The pill is NOT the proper treatment for endometriosis - it just masks symptoms. The disease will continue to grow and progress, no matter what form of medication is used.

While many OB/GYN’s are willing to perform surgery, most of them are not adequately trained. Endometriosis surgery is more serious and complicated than most people realize. The disease is highly complex and requires expertly trained surgeons. Most GYN's do not have the certifications or skills to operate in all infected areas. The disease manifests in many different shapes, colors, sizes, and locations, causing most surgeons to miss it entirely. If they manage to find any disease, the surgeon will most likely use ablation (vulgarization) to burn off the diseased tissue. This is NOT proper treatment, as deeply infiltrating disease cannot be burned. Unfortunately, women who receive this type of surgery have an 80% chance of Endometriosis coming back. 

Chilly's journey
Living in Norway we might feel like the luckiest people in the world in terms of our comprehensive Welfare State and free healthcare system and we are indeed fortunate. However when it comes to treatment of more complicated conditions, many people experience that the healthcare system does not have the capacity and expertise to treat them effectivly and some end up travelling to other countries to get adequate treatment. This is in large  because the goal of the system is to keep costs as low as possible  so that healthcare is available to all.

Unfortunately, this has been the case for our Chilly. 5 years ago, Chilly had surgery in the hope of removing the fibroid tumors that had grown inside of her. The doctors  only managed to remove 6 tumors that were the size of big potatoes leaving many other small tumors which have now grown even bigger than her previous ones. This causes her pain, discomfort and heavy bleeding that is way beyond the norm.

A little while back Chilly was told by the doctors in Norway that her condition of Endometriosis is so severe that they suggested the removal of her entire uterus, without taking into account the side effects of reaching menopause at such an early stage and the hormones she would then have to take. It is not hard to imagine that this was such a heart breaking thing to hear for any woman in her 30s and especially Chilly. Her family members and close friends were heartbroken too. 

Nonetheless being one of the strongest people we know, recieving this news did not break Chiletso. She came to terms with the fact that she would have a chronic disease she has to live with and her search was to educate herself more about the disease as many women suffer in silence just like she has done for many years. This became the beginning of research that would lead Chilly to find some of the worlds most renowned  experts in the field Endometriosis and the knowledge of the many diet restrictions one has to make in order to keep endemetriosis at bay. This is information that  she was never given by her doctors in Norway.

Chilly came across the Endometriosis center in New York as one of the leading experts for this condition when it comes to experience and technology. Dr. Kanayama´s is a leading expert in laparoscopic surgery, endometriosis, cervical cancer, ovarian tumor, infertility surgery, fibroids, pelvic pain. For more information on the clinic please visit: gynecosurgery.com 

Chilly went to New York with her mom in December of 2018 where she had an appointment with Dr. Kanayama to get a second opinion on her condition.  He confirmed that her condition was among the most severe he has seen; Her fibroid tumors had become so big that they grew out of her uterus and started affecting her other internal organs, causing them to bleed. That being said, he mentioned that her case was still possible to treat without removing the uterus and that he can help her. In fact he does not believe that removing the uterus is necessary nor the right treatment for Endometriosis. The doctor explained how he would do the surgery and said that he believes there is more than a 90% chance he will succeed with removing the tumors and with the right diet- by eliminating foods that cause inflammation from her diet, Chilly would finally manage to keep the disease at bay and she will no longer be in so much pain. This, of course, is the news Chilly could only hope for and we all are so grateful for. No matter the costs we all believe that this is the right path to follow and we are here to support Chilly on it. 

Help us help Chilly
Being that we are raising money via gofundme.com means that this journey is a very expensive one! The surgery is estimated to cost $27,000.00 &  the hospital bill will be between $15,000-30,000.00 depending on how many days she needs to be in hospital. In addition there are cost due to the traveling, a place to stay for 3 weeks in New York etc. There is no insurance that covers the costs for this expert surgeon. Any money raised will help the person we love and the money will help support her journey more than you know.
Chilly deserves relief from her pain after so many years of suffering. 

With this page we hope to raise awareness of the common condition millions of women are suffering from. We hope to spread knowledge about the treatments that exist in the world that are giving hope and enhancing the quality of life as well as we hope that we will be able to show Chilly that she is loved by many and has a support system larger than life.

Please prayerfully consider donating to our fundraiser. Your donations will help to cover some of the costs of surgery & hospital mainly, and maybe even travel & hotel expenses as well as other costs if we raise enough money for it all. 

Chilly's sister Karen and friend Ivana will be in charge of the funds once raised. Money will be transferred directly to Chilly´s bank account to help her cover the medical bills. If we exceed our goals, any extra donations will be given to another woman in the same situation by Chilly's choice. 

At last we would like to ask everyone reading this letter and donating, not to reach out directly to Chilly with questions right away. She didn't ask for this fundraiser and we want her to only feel the love and support during a difficult time prior to surgery by reading your kind words on this page. We will try to keep you updated with news along the way and Chilly will share with those who are close to her in her own time. Any questions you might have can be directed to Chilly's sister Karen Vanessa Lebie and her friend Ivana Klavis. You can find us on facebook. 

We want to thank you from the bottom of our hearts for taking the time to read this message, donate and share it with your friends. It means everything to us. <3 

Love is love,
Karen & Ivana