The Power of Support Through Rare Disease
- Endometriosis and lupus warrior singer-songwriter Halsey, who is living with a rare T-cell lymphoproliferative disorder, has praised her beloved fiancé Avan Jogia as “one of the greatest things that ever happened to me.”
- Dealing with a diagnosis is often a stressful and scary time. SurvivorNet experts encourage cancer patients and others going through health struggles to alleviate some of that stress by leaning on their support systems. A support system can include loved ones like family and friends, those dealing with similar struggles in a support group, mental health professionals, and more.
- 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.
Halsey, 29, is looking forward to turning 30 in just a few days, despite having to cope with endometriosis, a benign and often painful (non-cancerous) condition, an autoimmune disease called Lupus, and rare disorder diagnosis called T-cell lymphoproliferative disorder, which is a group of conditions affecting the lymphocytes, or while blood cells, that can be either genetic or viral infections, and cancerous or noncancerous.
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That same day, during the 2024 MTV VMAs, Halsey expressed how much she loves and adores her future husband, a 32-year-old Canadian actor and singer.
She told E! News at the VMAs, “Avan is the best. He’s one of the greatest things that ever happened to me. And every single day that I get to spend with him is one where I just feel like I’m with my best friend.”
Referring to how her fiancé has gotten along with her son Ender Ridley, 3, whom she shares with her ex boyfriend Alev Aydin, she insisted they are “best friends.”
“They’re inseparable,” Halsey continued.
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As for her new album, which is set for release on in Oct. 25, she also told E! News, “The Great Impersonator is something that I just thought of. I was going through all these different decades of music, and I was thinking about what it would sound like if I was a musician in those times.”
“I found myself being like, ‘Oh, I’m impersonating Bruce Springsteen. I’m impersonating Cher,'” she added, before pointing out her admiration for Taylor Swift, explaining, “I know every word to every Taylor song ever.”
Halsey’s Health Struggles
Halsey, who goes by the pronouns she/they, told PAPER Magazine in a recent interview that she was diagnosed with a rare disorder on her 28th birthday in 2022.
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.
“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.
Halsey explained further in a June 5 post on Instagram, writing, “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.”
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Lupus is a disease that often affects your skin, joins, and internal organs such as your heart and kidneys.
Additionally, the most common type of 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).
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 also suffers from endometriosis, 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.
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Supporting a Loved One Through Rare Disease or Cancer
It is important for cancer warriors in the midst of their fight to have a strong support system. Having a partner, friend, or family member by your side to help care for and support you through a health struggle can be advantageous.
And when a loved one takes on a caregiving role, it’s necessary to understand the person’s diagnosis and assist them when following cancer-care instructions.
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Dr. Jayanthi Lea, a gynecologic oncologist at UT Southwestern Medical Center, previously told SurvivorNet, “I encourage caregivers to come into visits with my patients because in that way, the caregiver is also listening to the recommendations what should be done in between these visits, any changes in treatment plans, any toxicities [side effects] that we need to look out for, changes in dietary habits, exercise, etc.”
If you are a caregiver of a cancer warrior, it is important to maintain your own mental and physical health as well.
“Caregiving is the most important job in the universe because you are there through the highs and lows,” Julie Bulger manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center told SurvivorNet.
“You are there to support your loved one, to manage all of the daily tasks as everything is changing in your life.”
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Having a strong community around you, as Halsey does, is ideal when challenged by health struggles.
Dealing with cancer or any sort of health battle for that matter can be overwhelming, so having physical and emotional support is crucial. That being said, it’s very important to know your limits on what you can handle as you undergo treatment and recover from your cancer, and that includes relationships.
“Going through [cancer] treatment is a very vulnerable and emotionally exhausting experience,” licensed clinical psychologist Dr. Marianna Strongin wrote in a column for SurvivorNet. “Noticing what you have strength for and what is feeling like too much, [is] extremely important to pay attention to as you navigate treatment.”
Dr. Strongin does note, however, that having people by your side during this “arduous chapter” of your life can be hugely beneficial.
“Studies have found consistently that loneliness is a significant risk factor for physical and mental illnesses and the trajectory of recovery,” she wrote. “Therefore, it will be important that you surround yourself with individuals who care and support you throughout your treatment.”
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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.
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Contributing: SurvivorNet Staff
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