Dealing with a Rare Disease
- Singer-songwriter Halsey, who is living with endometriosis and the most common type if lupus, systemic lupus erythematosus (SLE), says she was diagnosed with a rare T-cell lymphoproliferative disorder on her 28th birthday.
- 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.
- 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.
- 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.
Now, the 29-year-old New Jersey-native, who was born Ashley Nicolette Frangipane and also lives with an autoimmune disease called Lupus, said in a recent interview that she is confirmed to have a T-cell lymphoproliferative disorder.
Read MoreMy 5th studio album “The Great Impersonator” coming October 25th.
I made this record in the space between life and death. And it feels like I’ve waited an eternity for you to have it. I’ll wait a bit longer. I’ve waited a decade, already.
Pre-order available now. pic.twitter.com/xyV5D9ryqX— h (@halsey) September 4, 2024
Halsey, who goes by the pronouns she/they, told PAPER Magazine that her health struggles played a role in her upcoming album “The Great Impersonator,” which is set for release in October, nothing that she was diagnosed with a rare disorder on her birthday in 2022.
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.”
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?'”
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Halsey 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.”
This wasn’t the first time Halsey spoke about having a rare T-cell lymphoproliferative disorder. On June 5, Halsey shared a photo of herself playing piano, alongside a lengthy captioned, which read, “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.”
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She explained, “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.”
Lupus is a disease that often affects your skin, joins, and internal organs such as your heart and kidneys.
Additionally, the most common type if lupus is systemic lupus erythematosus (SLE), the type Halsey has, 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).
Anyone can get lupus, however, the following people are at a higher risk:
- Women between the ages from 15 and 55
- Specific racial or ethnic groups (African American, Asian American, Hispanic/Latino, Native American, or Pacific Islander)
- If a family member has lupus or another autoimmune disease
In an earlier video clip shared on her social media page, Halsey is seen in a video clip massaging her lower legs, seemingly in pain, saying, “Seriously, I feel like an old lady. I told myself, I’m giving myself two years to be sick. =
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“At 30 [Halsey was born in September 1994], I’m having a rebirth and I’m not going to be sick. And I’m going to look super hot and have lots of energy. And I’m just going to get to redo my 20s in my 30s.”
At the time, we knew Halsey had endometriosis, but she hadn’t yet confirmed the “sickness” she’s been dealing with.
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.
She wrote alongside the footage, “Long story short, I’m Lucky to be alive. Short story long, I wrote an album. It begins with The End. Out now.”
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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.
‘Let It Out’: Healing Emotionally After a Life-Changing Experience
Overcoming Adversity
Getting a new diagnosis, whether it’s cancer or a rare disorder like Halsey, and going through the treatment process can be incredibly stressful. It’s completely normal to feel anxious, scared, sad, and so much more. The disease is a mental challenge as well as a physical one.
Facing Cancer: How to Turn Stress into Strength
One way to get your mental health back in check after a diagnosis is to try to play up your strengths, Dr. Samantha Boardman, a New York-based psychiatrist and author, previously told SurvivorNet.
“I sometimes will ask patients, tell me about yourself when you were at your best,” she explained. “Using that story, trying to figure out what strengths come to mind. Is it patience? Is it appreciation of beauty? It is perseverance? [Then we can] use those strengths in constructive ways to navigate their cancer journey.”
Dr. Boardman said another way to approach harnessing the strength you already have is by tapping into your values. This could be family, close friendships, spirituality, or commitment to a healthy lifestyle.
Reminding yourself of what your values are and how you are living accordingly is another way to unleash that inner strength.
Lastly, patients shouldn’t underestimate the value of simply opening up, Dr. Boardman said. This could mean speaking to a close family member or friend, or it could mean seeking support in other ways, by finding a therapist that meets your needs or looking into joining a support group.
Having negative feelings throughout your health journey is to be expected, however, doctors will tell you that people who find a way to work through the emotions and stay positive tend to have better outcomes.
“A positive attitude is really important,” Dr. Zuri Murrell, a colorectal surgeon at Cedars-Sinai Medical Center in Los Angeles, previously told SurvivorNet.
I’m pretty good at telling what kind of patients are going to still have this attitude and probably going to live the longest, even with bad, bad disease. And those are patients who, they have gratitude in life.”
Contributing: SurvivorNet Staff
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