Celebrating Milestones Amid Living With a Rare Disease
- Leading up to Halsey’s fifth studio album release later this month, the singer-songwriter celebrated her “symbolic” 30th birthday while living with endometriosis, systemic lupus erythematosus (SLE) [the most common type if lupus], and a rare T-cell lymphoproliferative disorder.
- T-cell lymphoproliferative disorder are a group of conditions affecting the lymphocytes, or while blood cells. They can be either genetic or viral infections. And depending on the type of disorder they can be either cancerous or noncancerous.
- “Lupus is a chronic (long-term) disease that can cause inflammation and pain in any part of your body. It’s an autoimmune disease, which means that your immune system, the body system that usually fights infections, attacks healthy tissue instead,” according to the Lupus Foundation of America.
- Handling a rare disease can be very overwhelming, but SurvivorNet’s experts have guidance on how to seek out specialized treatment providers. The SurvivorNet Clinical Trial Finder and websites called Clinicaltrials.gov and PubMed are great resources to use if you’re considering experimental treatment for your rare disease. These databases can also help you find doctors who specialize in your disease.
- Reaching milestones during or after a cancer battle, or rare disease, is huge and just hits different for many survivors. Special moments such as getting engaged, reaching another birthday, like Halsey just did, a high school reunion, or even a “cancerversary” “may mean even more to you than those events did previously, so it’s important to take them all in and celebrate all that you’ve overcome.
Halsey, born Ashley Nicolette Frangipane, took to social media to share some images from her birthday party, with the cover photo showing her singing into a microphone with one am around her fiancé Avan Jogia as he holds an American flag.
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She continued, “I don’t know how they did it. But they made all the noise of my twenties stop, and replaced it with joy. The universe, God, the stars have done this to me twice. First, just before I turned 20. By challenging me with difficulty for years and then giving me life altering joy just as I slid into base, from 19.
“And now by giving me a twenties full of struggle turned lesson turned growth, and replacing it with JOY as I transition from 29 to 30. And both times, that buzzer-beater joy is so strong that it settles the 9 years that came before it.
Halsey then informed her fans that “this birthday is symbolic to me for so many reasons,” as well as all her other birthdays “till the end of time.”
“I am so grateful to see them all arrive. Thank you for all the birthday wishes,” she concluded.
Other photos from her party revealed the night was equipped with dancing, singing, and even a large vanilla cake, with rainbow sprinkles in the batter.
Her Sept. 29 birthday comes less than one month of her fifth studio album release date, which she has been counting down on social media with fun Instagram posts.
Halsey wrote in one of her posts, showering her impersonating “the queen Dolly Parton,” “The countdown to The Great Impersonator begins.
“From now till the album drops on October 25th, I will be impersonating a different icon every day and teasing a snippet of the song they inspired.”
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Other artists she’s been influenced by are include singers PJ Harvey, Kate Bush, Cher, David Bowie, Evanescence co-founder Amy Lee, The Cranberries’ Dolores O’Riordan, Stevie Nicks, Bruce Springstein, and Linda Ronstadt.
Halsey’s Health Struggles
Halsey, who goes by the pronouns she/they, recently told PAPER Magazine that her health struggles with lupus, a rare disorder, and endometriosis have all played a role in her upcoming album “The Great Impersonator,” which is set for release in October 25.
Referring to her rare diagnosis, she told the magazine, “I had a tiny little baby and I was on my tour, and it was my 28th birthday when I got the confirmation of my T-cell lymphoproliferative disorder diagnosis.
‘I had to stop asking the universe for sh*t. I had to just stop, because before this record, I remember being at home like, I have my perfect little family with my baby and my partner. What am I going to write about? I have nothing to write about.”
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Halsey continued, “I’m always writing about conflict and tragedy and transgressions, and I felt that I didn’t have anything to write about. The universe was like, ‘Yeah? What about this?’”
She also commented on how doctors advised her that in order to heal, she would ned to stop working.
“It seemed unfair, because the answer was, ‘If you want this to go away, quit your job,’ she said, further questioning,“If I spawned in any other decade, or any other parallel universe, does it always go this way? Do I always end up Halsey? If I end up Halsey, do I always end up sick? I was playing out these alternate realities.”
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Halsey, who released her new “Ego” music video just last month also previously spoke about her struggle with endometriosis.
Endometriosis is a benign (non-cancerous) condition that occurs when tissue similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. Symptoms include pelvic pain, pain during sex, and heavy vaginal bleeding.
However, in addition to life with endometriosis, she is also living with T-cell lymphoproliferative disorder, which is a are a group of conditions affecting the lymphocytes, or while blood cells. They can be either genetic or viral infections. And depending on the type of disorder they can be either cancerous or noncancerous.
“These diseases often occur in immunocompromised individuals. There are two subsets of lymphocytes: T and B cells that regenerate uncontrollably to produce immunoproliferative disorders, which are prone to immunodeficiency, a dysfunctional immune system, and lymphocyte dysregulation,” an article published in the National Library of Medicine explains.
As for lupus, the Lupus Foundation of America, says it’s a “chronic (long-term) disease that can cause inflammation and pain in any part of your body” and “an autoimmune disease, which means that your immune system, the body system that usually fights infections, attacks healthy tissue instead.”
Halsey has the most common type if lupus, known as systemic lupus erythematosus (SLE), however there are three other types of this disease. The other types are Cutaneous lupus (which is limited to the skin), Drug-induced lupus (which is caused by prescription drugs), and Neonatal lupus (a rare condition that affects infants of women with lupus).
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In a June 5 post on Instagram, Halsey explained, “Thank you guys for the unbelievable amount of love for ‘The End’ and the support you’ve shown me since its release. I realize everyone is catching up with news I’ve held in for a very long time, and I wasn’t sure how much I wanted to share. You’ve all been so kind so I want to share a bit more.”
She continued, “In 2022, I was first diagnosed with Lupus SLE and then a rare T-cell lymphoproliferative disorder. Both of which are currently being managed or in remission; and both of which I will likely have for the duration of my life. After a rocky start, I slowly got everything under control with the help of amazing doctors.
“After 2 years, I’m feeling better and I’m more grateful than ever to have music to turn to. I can’t wait to get back where I belong: With you all. Singing and screaming my heart out.
Reaching Milestones
Reaching milestones during or after a cancer battle, even many years later, is huge and just hits different for many survivors.
Special moments such as getting engaged, reaching another birthday, a high school reunion, or a “cancerversary” may mean even more to you than those events did previously, so it’s important to take them all in and celebrate all that you’ve overcome.
Chrissy Degennaro is also a cancer warrior determined to keep enjoying these precious milestones. She has been battling a rare blood cancer called multiple myeloma for 14 years, and was first diagnosed when she was just 36 years old with a 2-year-old son.
I’m Able to Be Here For More Milestones — One Cancer Survivor’s Incredible Story
When she was given her diagnosis, she almost expected to not be able to see him enter kindergarten. But thanks to 27 rounds of chemotherapy, two stem cell transplants, a CAR-T cell trial and two CAR-T cell transplants over following 14 years, she’s able to keep making memories with her family.
“You know, I do live one day at a time,” Chrissy previously told SurvivorNet. “Now, maybe I can go a week, a month, but things are looking pretty good. I’m able to be here for more milestones for my son, for more holidays, more birthdays. I do feel like I have had another chance at life.”
Have a Rare Disease? Here are Some Resources
All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.
Academic Centers and Comprehensive Care Centers
For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.
In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.
Seeking Care at a Comprehensive Cancer Center
“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”
Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.
“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”
Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder
Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment ) or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.
Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.
Clinical Trials Can be Life-Saving for Some
Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.
By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.
And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.
To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.
“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”
PubMed
Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.
If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.
Newly-Developed Drugs
For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.
The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.
Compassionate Use and Off-Label Use
Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.
Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.
Contributing: SurvivorNet Staff
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