Medical Hero Story: Jackie Zimmerman, MS Advocate

Jackie Zimmerman is an accomplished entrepreneur, marketing professional, former roller derby league president, and non-profit founder with a “can-do” energy that is clear when you speak with her. She is also a patient advocate for people with multiple sclerosis, also called MS. She herself received the diagnosis during college at the age of 21. In the face of this news, Jackie decided to share her story with others. She later became a participant in clinical research. 

“It was a total surprise  no one in my family has it,” Jackie said. “My first question was…am I going to die? I didn’t know anything about MS. And all the patient-facing documentation was targeted at older individuals.” 

Jackie found this surprising, particularly when she learned that most patients are diagnosed in their twenties. To help process this news, she turned to blogging. 

“Initially, I started a newsletter and then it became a blog. This was before social media, so blogs were how you connected. Blogging got me on the scene of patient advocacy. There are lots of advocates now, but then, there weren’t as many,” Jackie explained. 

Jackie was diagnosed with relapsing remitting MSWith this form of MS, symptoms may “flare up” and then seem to be gone for a period of time. Jackie’s first symptoms were during a flare. At that time, the standard of care was given through an injection. 

“Which was really scary at 21  who likes needles?” Jackie said. “My doctor didn’t provide any guidance. He told me to pick whatever medication I wanted. Today, there are many different options and methods of delivery.” 

Another complication in the treatment of MS is that in terms of symptoms, reactions to medications, and outcomes, no two cases are alike. 

Jackie first participated in an MS clinical trial in 2008. However, she was unable to complete it due to unrelated treatment she was receiving forinflammatory bowel disease, also called IBD. Over a decade would pass before Jackie would join another clinical trial. 

During that time, Jackie founded Girls with Guts, a non-profit to support women living with IBDShe became a more active patient advocate. This led to public speaking engagements and work with healthcare and pharmaceutical companies looking to connect with patients. 

There were 2 factors that steered her back to clinical research as a healthcare option for MS. 

“I asked my neurologist questions, because I wanted to keep abreast of things, particularly because I write about them as an advocate,” Jackie said. “Being part of a patient advisory board for a bio-pharma company was also a huge driver. I understand about clinical research participation and what it means. The only factor this second time was a consideration about the time commitment  it’s about a 25-minute drive away. The trial does offer transportation if you need, which I think is awesome, but I don’t need it.” 

When asked about other influences in her decision-making, Jackie commented, “I’m married, so my husband was involved. He said it’s my choice, but I considered him in the process, and all the things you think about when you’re involved in a partnership. I know how to talk with my friends and family about clinical trials to allay their fears. I know how to position it so as not to scare anybody.” 

Jackie did not consult any patient advocacy organizations for guidance before participating. 

“I’m in the minority here because I know a lot more about clinical trials than the average patient. I knew what questions to ask because I had been on a patient panel and participated in an FDA patient advocacy training. I’ve spent a lot of time learning about trials.” 

Jackie shared some wisdom based on her experience with clinical trial participation. 

“Oh man, there’s so much advice,” Jackie replied, laughing. “I have so many angles. Mostly, don’t be afraid of them. It’s not a last resort for MS in terms of treatment. It’s a way to assist your community and get access to medications, years in advance. You’re so heavily monitored that the potential for anything going wrong is quite low.” 

Jackie would consider participating in future clinical trials. 

“Yes  as long as it fits into my life and it’s not an inconvenience or as long as the potential benefits outweigh the potential inconvenience. I know I have a lot of privilege  I can work from home and make my own schedule. If you’re looking at trials that may not fit into your life, know that there are pharma companies working around participant schedules with office and home visits. If it’s not feasible right now, it doesn’t mean that it will never be feasible.” 

Note: COVID-19 has led many sponsors to offer virtual clinical trials and the use of digital devices to monitor patient progress. CISCRP recently conducted a survey on the impact of COVID-19 on clinical research. Access the reporthere.

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

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Medical Hero Story: Jillian McNulty, Cystic Fibrosis Advocate

Born with cystic fibrosis, Jillian McNulty has spent her entire life fighting to stay healthy.

It was only during a clinical trial, when she tried a new medicine called Orkambi, that she met with success. Since then, she’s been fighting for other cystic fibrosis (CF) patients to have access to the drug too.

One of four children, McNulty’s oldest brother had cystic fibrosis and died when he was five-and-a-half. Her prognosis wasn’t good either. When she was born, doctors told her parents she wouldn’t live past her fifth birthday. She’s now 43 and jokes that she has geriatric CF, and is grateful to be alive.

Last hope
Over the years, McNulty has suffered from recurring pneumonia, and sometimes spent 8-9 months out of the year in the hospital.

“I didn’t have a great quality of life,” she recalls, noting her condition was at its worst in 2012 after her other brother, who had special needs, died. She was able to run a marathon before her lung function dropped from the high 50s (percent) to the 30s. She became dependent on IVs and antibiotics.

Fortunately, McNulty qualified for the Orkambi clinical trial, which required her to have lung functioning in the 40s and to not be hospitalized for four or more weeks.

She got emotional when she got the news that she qualified. “I can remember I cried my eyes out because to me this was my last chance, my last hope. Things started to turn after that.”

Though she struggled for the first four months of the trial, at six months her hospitalizations started to decrease. But things took a turn in 2016, when she contracted swine flu and influenza A at the same time. Her lung function was down to 11 percent. Things were grim, but McNulty pushed on.

Changing lives
“Orkambi brought me back from the brink,” McNulty says, explaining it took three months to recover.

She says the drug, which is manufactured by Vertex, works on the underlying cause of CF, a life-threatening disease that affects approximately 75,000 people in North America, Europe, and Australia.

“It’s not a cure but it tweaks the channels so our bodies respond better,” says McNulty, whose lung function is now at 42 percent.

These days, she spends only six weeks a year hospitalized. But now she’s struggling with end-stage kidney disease, another chronic condition she’s had for years, and needs a kidney transplant. But before that, she needs a lung transplant.

Still she’s optimistic about her future and the future of other CF patients.

“It’s all changing. People with CF are going to live so much longer,” says McNulty. “That’s incredible.”

The CF advocate
For the past 11 years, McNulty has campaigned for CF patients in her native Ireland, including lobbying the Irish government to make sure Orkambi and other medications were made available for CF patients. Her campaign was successful and she obtained “pipeline” approval for 10 years of promised accessibility to the drug.

“My friends were dying and I couldn’t stand by and say nothing,” says McNulty, who’s won three awards for her advocacy. “I needed people to see what Orkambi had done for me.”

She’s also been instrumental in campaigns related to the hospitalization of CF patients, helping ensure they get single-unit hospital rooms to prevent them from being exposed to other sick patients while their immune systems were so compromised.

Her advocacy continues on, and she urges patients with CF and other conditions to participate in clinical trials: “It’s worth the chance, it’s worth the risk. It has the potential to transform your life in ways you can’t imagine.” 

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

 

Medical Hero Story: Shauna Whisenton

Shauna Whisenton was once an individual living with sickle cell disease (SCD). Now she’s an advocate for better therapies, a cure, and better under-standing of SCD.

Whisenton, now 41, was born with SCD, a painful, inherited disorder where red blood cells are misshaped, restricting blood flow and oxygen to parts of the body.

“It was all going pretty well until I had my third son,” she says. “Then my health started to take a turn for the worse.”

While nursing, she was admitted to the hospital every few weeks and, despite best efforts, was not replenishing enough fluids for her body to function properly and had major organ complications.

Her doctor asked her to consider a bone marrow transplant clinical trial to cure SCD.

Whisenton didn’t believe she could be cured and some members of her family were unsure if she should undergo the treatment. For many in the minority com-munity, there is a fear that medical testing may exploit patients instead of helping them. However, clinical trial oversights ensure safety during participation.

After consulting an SCD patient advocate, she realized, “Although a cure is not guaran-teed, this could be an amazing opportunity. If that is not possible for me, researchers could learn something from my participation to save others.”

Finding a donor

The best chance for a donor match would be a family member. Whisenton lost her parents when she was a child and her sister wasn’t a match; but her 9-year-old son, Dorian, was a 50-percent match.

A successful transplant meant a better life for Whisenton and her family.

“I felt like my children had suffered enough watching my pain,” she says.

Whisenton’s son had marrow extracted from his pelvis bone. It was a one-day procedure for him but the start of a two-year ordeal for his mother.

 
Journey

Whisenton’s journey was tough. She was hospitalized, received anti-rejection medications, and had to undergo was an important part of procedure preparation and recovery. This included coordinated care to provide relief from the symptoms of her disease and the transplant, including pain and detoxing from opiates, but also the physical and mental stress from the procedure.

“It’s important to equip someone who’s received a curative therapy with tools to rebuild their lives during and after recovery,” she says.

Within nine months of receiving the bone marrow transplant, Whisenton was SCD-free and now only carries the trait.

Whisenton calls the date of her transplant her birthday.

 
Patient advocate
 

Whisenton has made it her life’s work to help those living with SCD. She’s the manager of sickle cell disease community engagement for the ASH Research Collaborative (ASH RC) Sickle Cell Disease Clinical Trials Net-work (CTN), established by the American Society of Hematology, the world’s largest professional society concerned with the causes and treatments of blood disorders.

Whisenton is carrying out the mission of the ASH RC CTN to improve the lives of individuals with SCD by expediting the development of new therapies through innovative clinical trial research. Whisenton ensures that the voice of the patient is heard at all stages of these clinical trials.

“SCD warriors, don’t lose hope. There are many treatments in the pipeline to help those living with this disease have a better quality of life. Our hope is that advances in research will bring more effective treatments to individuals living with SCD.” 

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Medical Hero Story: Rachel Patties, Congenital Generalized Lipodystrophy Advocate

Oklahoma Mom on a Mission Reflects on Daughter’s Rare Diagnosis

Rachel Petties, a mother of five, refuses to let her daughter’s rare genetic disorder define the lives of their family.

From the moment she first laid eyes on her daughter, Rachel Pet­ties knew something was wrong.

“Alani was all muscle,” she recalls. “She had no body fat whatsoever. Her head size seemed abnormal, and her belly was very large. She was stiff and cried all the time.”

It was the beginning of a diffi­cult journey.

“I ended up dragging my infant baby girl in and out of hospitals, doctor to doctor, specialist to spe­cialist,” Petties says. “You have no idea what loneliness is until you have to pack your child up, hop on a plane and trust someone to help you when you know no one else believes you.”

Receiving the diagnosis
In 2015, Alani was clinically diag­nosed with congenital general­ized lipodystrophy.

“My world crashed, and I’m still recovering from the loss,” recalls Petties, a single mother of five. “Receiving her diagnosis was a bit­tersweet moment – my suspicions were confirmed, but I was very sad because what was wrong with her was worse than I expected.”

Alani, now 4 years old, was enrolled in a long-term clinical trial program at the National Institutes of Health to evaluate her treatment and find improved ways of treating the disease through pre-screening and other medical advances. The hope is to prevent future complications by identifying and addressing problems early on.

“She’s a patient for life,” says Pet­ties. “I’m extremely encouraged. Alani has elite specialists study­ing her case. She’s monitored closely and watched by top profes­sionals in the field.

“We have to travel once a year to Bethesda, Maryland for a host of tests that usually last 2-3 days. It’s a very stressful time for us, but we know it’s necessary.” 

Finding the strength
Petties’ days are long and exh­austing. She must prepare special foods for Alani and is the only fam­ily member trained to administer crucial injections.

“It’s very isolating, and I’m afraid of what will happen if I’m ever physically unable to give her this medicine,” she says.

Restricted mostly to the ind­oors, Alani can be awake for 24 hours and sleep for 15 hours str­aight. Her home must be bleached daily to fight germs, and she must be monitored for exces­sive eating.

“Before gaining some control over this disorder through the clinical trial she’s cur­rently on, Alani would eat the paint off the walls, erasers, socks and soap;’

Petties says Although she’s cut back dramatically to focus on her kids, Petties is committed to getting the word out about lipodystrophy.

“I woke up every morning with the mentality to outrun this disease,” she says. “I ran state to state, city to city, advocating with every ounce of life in me. We marched in Washington and visited senators’ offices, petitioning for their help.

“Sometimes you’ll want to fight, other times you won’t care one bit. I had to teach myself that it’s important to be okay with all those emotions and just get through the day, because every day Alani wakes up is another day this disease didn’t win.”

Alani, who enjoys dancing and performing karaoke, knows she’s different and doesn’t care, accord­ing to her devoted mom. And although weary, Petties herself finds beauty in the darkness.

“I am rare,” she says. “I am a mother of a child who holds a title of 1 in 10 million. That by far is nothing to be sad about. She is incredible and unique, and she’s all mine.” 

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Medical Hero Story: Rachel Minnick, Passionate Clinical Trial Volunteer and Advocate

Remembering Rachel Minnick

Rachel Minnick dedicated much of her life as a medical hero. We honor and remember her legacy. 

Diagnosed with stage 2 breast cancer in 2013, the wife and mother of two fought back fiercely against the disease with double mastectomy, chemotherapy and radiation. She participated in a clinical trial. And she worked tirelessly to educate others about their treatment options and the clinical research process.

“Rachel was always pro research, pro clinical trials,” says her husband, Pete Minnick. “She always had that mindset ‘we’re on the cutting edge of medical breakthroughs and technology,’ and she wanted to be on that cutting edge.”

Her cancer was in remission from 2014 to early 2017, until she began experiencing pain in her back and neck. It was at this time that her doctors informed her that the cancer was back and had spread to her bones. “That was a huge blow to us,” Pete says, noting it was stage 4 cancer. ”She knew she wasn’t going to be cured.”

In early 2018, the cancer spread to Minnick’s Iungs and liver. She was actively looking for her next clinical trial when she passed away in April, at age 39, but her legacy lives on.

Meaningful work

Prior to her cancer spreading, Minnick took a position as a Senior Manager of Marketing and Patient Engagement Alliances at The Cen­ter for Information and Study on Clinical Research Participation (CISCRP), a non-profit dedicated to educating the public and patients about clinical research. 

She was passionate about her job for many reasons not only was there a focus on the patient com­munity but it also allowed her to work from her Philadelphia-area home which gave her the oppor­tunity to continue her medical care as well as spend time with the couple’s children, Emily and Sam, now ages 9 and 7.

Being a part of CISCRP was more than a job for her.

“She felt like she was helping the entire clinical trial community as well as doing something she liked,” says her husband. CISCRP gave her the opportu­nity to offer hope to other people who were in her same situation.

Personal experience

“Rachel had direct experience which gave her such an inside perspective,” says her former boss, CISCRP founder, Ken Getz. “It fed her compassion and helped her understand, even more deeply, what so many patients are going through.” Getz says Minnick’s leg­acy lives on through her work; the panels she moderated, the clinical trial awareness initiatives that she spearheaded, her collaborative projects, and the enduring educa­tional brochures, newsletters and other patient communications that she wrote during her time with CISCRP.

“Her passing was truly a shock to me,” says Pete Koerner, a phar­maceutical industry colleague, who worked with Rachel and the CISCRP team for two years.

He described Minnick as some­one who was always enthusiastic, passionate and dedicated to her family, her staff and her work.

“She was invested in clinical research,” says Koerner, explain­ing Minnick was proud to be the patient voice and wanted to advance the techniques and technologies in the clinical trials process.

“She felt like she was helping the entire clinical trial commu­nity.” Getz reflects on Minnick’s lasting impression, “Her compas­sion combined with her profes­sionalism and the passion that she brought to CISCRP has inspired so many people – those who reported to her, those who she mentored, and those with whom she col­laborated. That will stay with us forever. She truly helped to define our culture and evolve it in such meaningful ways.”

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Medical Hero Story: Shanelle Gabriel, Lupus Advocate

When Gabriel was in college, she always felt tired and would wake up feeling stiff. She dismissed it as general soreness from working out with her dance team.

The Brooklyn-native Gabriel, then 21, went to her doctor, who told her she probably had sinus problems and encouraged her to take allergy medicine.

Diagnosis

A turning point came a month later when she noticed patches of hair missing. She went to a different doctor who asked her a series of questions, including about how tired she was and whether her hands changed colors when they got cold. After testing, Gabriel was diagnosed with lupus, an autoimmune disease.

At the time, there weren’t medications specifically designed to treat lupus. Instead, doctors had a blanket approach and prescribed a variety of medicines, including steroids, to treat symptoms, but nothing was specific to the illness.

“Nobody knew how much pain I was in,” said Gabriel, now 36, who describes lupus as, “a hidden disease.”

Many of the medicines had side effects, including increased risk for liver and kidney problems, as well as cataracts and glaucoma.

She still had flare ups that sent her to the hospital, including an inflammation of the membrane around her heart. It was so bad, she had to leave an internship and quit the dance team.

After graduating, Gabriel toured the country as a poet and singer. While in Montana for a performance, she suffered an episode that caused her to be hospitalized due to a lupus-related condition that causes blood clots.”

Clinical trials

When her doctor suggested trying a clinical trial for a new lupus treatment, Gabriel, who’s African American, balked. She was worried because, historically, people of color have been taken advantage of during medical trials.

She later found out the trial was a success and her doctor prescribed the approved drug. The treatment worked but it was demanding, as Gabriel needed to take a full day off from work to receive IV therapy.

Next, Gabriel decided to participate in the next clinical trial, which tested that approved medicine as a self-administered, weekly therapy.

For Gabriel, this drug helped make her symptoms more manageable allowing her to discontinue her use of steroids.

Stigma

While Gabriel was initially nervous about clinical trials, she’s glad she talked with her doctor and other medical professionals, and realized that clinical trials are essential for finding new therapies and cures.

“Due to a lack of participation by women of color in a lot of these trials, (researchers) were not able to actually track if it worked for us,” she said. “There’s only one way to find out if it works; somebody has to do it.

“I just felt like, ‘You know what? I’m fine with that, because there could be a really great benefit from it.’ And I did end up benefiting from it.”

Gabriel is on the patient advisory boards for The Center for Information and Study on Clinical Research Participation, a non-profit dedicated to educating and engaging the public and patients about clinical research.

She encourages patients with lupus and other diseases to consider clinical trials, which have many safeguards to minimize danger for participants. She recommends doing your own research, asking questions, and talking to your doctor about clinical trials.

She’s sharing her story and hopes to inspire others.

“It’s becoming a community of people that are advocating and I think there is hope for a cure,” Gabriel said.

Featured in the June 2020 Clinical Trials Supplement, USA Today

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Medical Hero Story: Juana Espino, Motherhood & Cervical Cancer

Juana Espino, her husband and two children were all looking forward to the birth of her third child. Two weeks before her delivery date, Juana started spotting blood. Juana immediately made an appointment with her obstetrician. During the exam, the physician located a mass near her cervix and recommended a biopsy, after the baby’s birth. Juana’s c-section went well and her new daughter was healthy.

But Juana was not.

The results of the biopsy indicated that she had Stage 4 cervical cancer.

“From there, it was just a rollercoaster, at first,” recalled Juana. “I didn’t have health insurance. You always have a pap smear at the beginning of your pregnancy, and mine was normal. The cancer had really grown while I was pregnant, and the doctor was worried about it metastasizing.”

The incidence of cervical cancer complicating pregnancy is low; only about 1% – 3% of woman diagnosed with cervical cancer are pregnant or postpartum when they are diagnosed. (1)

After discussing several options of treatment, Juana’s obstetrician advised that she meet with Dr. Joseph A. Lucci, a board-certified gynecologic oncologist at The University of Texas Health Science Center at Houston (UT Health). Dr. Lucci was also the Principal Investigator of a clinical trial treating Stage 4 cervical cancer. Juana met with Dr. Lucci and learned more about the course of treatment that the trial would include: a hysterectomy, followed by 6 weeks of chemotherapy and radiation.

“The good thing is, I have a big family,” said Juana. “I talked about it with my husband and my 6 sisters went with me to talk with Dr. Lucci about the clinical trial. I am grateful that I had a big support system. I was truly blessed.”

Since Juana was the mother of a newborn, it was decided to delay chemotherapy and radiation for two months. This lead to another difficult decision.

“Because I was having radiation treatment, we decided that my mother would take care of our baby, to be on the safe side,” Juana recounted. (Patients receiving certain types of radiation treatment are advised to limit or avoid contact with children under the age of 18 and pregnant women. (2) “It was hard, to be honest, but  I knew my mother would take good care of her. I did get to see the baby, of course, and when I did, I was really careful. I would dress in layers (because of the radiation) and hold her on a pillow, not directly.”

Juana’s sisters were encouraging when the effects of the radiation treatment became particularly severe during the last part of treatment. “I didn’t feel as sick during chemo as I did during the radiation,” Juana explained. “The radiation was really painful and my sisters kept telling me that I could do it.”

Aileen, Juana’s niece, was also instrumental in supporting her during treatment. “She postponed going to college, to be with me on this journey,” said Juana.

Juana was impressed with the care she received during the clinical trial. “I could call Carole Robazetti (the coordinator) in the middle of the night, and she’d be there. Dr. Lucci was also available at any time to discuss how I was feeling and what was happening,” said Juana. But Juana didn’t discuss one major impact that she experienced, until three years after the trial had concluded.

While participating on a CISCRP Patient Advisory Board, Juana listened to panelists describing the physical and emotional impacts of severe atrophic vaginitis, symptoms that she was experiencing, but never discussed with Dr. Lucci or Carole. (CISCRP Patient Advisory Boards solicit feedback and gather valuable insights directly from patients and their support network on a variety of critical clinical study related areas. Learn more here.

“I was afraid to speak up and after I heard the others share their stories, I decided to talk with Carole. She asked me why I hadn’t said anything before, and I just hadn’t felt comfortable.” Juana was prescribed medication that has improved the condition significantly.

The treatments Juana received in the clinical trial eradicated the cervical cancer. Juana and Carole became friends.

“I really wanted to give back somehow, and Carole told me about WOW, the Women Well Program,” said Juana. WOW was founded in 2018, under the umbrella of the Latattore Foundation and the University of Texas. WOW provides pap smears and mammograms at no cost to low-income/uninsured women through monthly community health fairs. Learn more about WOW at https://latattore.com/wow/.

“Members of the Hispanic community don’t always have health insurance, so WOW is helping to save peoples’ lives. I started as a volunteer and now I’m on staff,” said Juana.

Juana says she would participate in a clinical trial again, and that she would be more open to discussing related impacts. “We need to speak and let people know what’s happening,” Juana said.

When asked if she has any words of advice to individuals considering clinical trial participation, Juana advised the following.

“When you’re deciding about a clinical trial, read everything. Read every detail. Those little details will help you decide if you want to be part of it. And get a second opinion before you make your final decision.”

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Sources:

(1)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6745864/#:~:text=The%20incidence%20of%20pregnancy%20complicated,the%2012%20months%20after%20delivery

(2) https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/understanding-radiation-therapy

Medical Hero Story: Leah Crocker, Lupus Advocate

Lupus is an autoimmune disease that causes your body’s immune system to attack your tissues and organs. Difficult to diagnose, Lupus can remain dormant in an individual’s body, only to be “woken up” by an illness or major surgery. This was the case for Leah Crocker. In 2000, Leah had just undergone carpal tunnel surgery on both hands but wasn’t healing properly. At this time, her orthopedic surgeon suggested she consult a rheumatologist. Upon seeing a rheumatologist her blood work came back positive for Lupus.

A disease with no cure, Lupus is managed through treatments that help patients control their symptoms. Soon after her diagnosis Leah began experiencing numbness in her fingers. This issue was identified as Raynaud’s phenomenon, a common symptom of Lupus. Raynaud’s is a condition that results in the discoloration of the fingers and toes in response to cold temperature or stress. During this time, Leah was prescribed an anti-malaria drug to help. However, her condition would soon grow worse when she discovered that gangrene had set into two of her fingers. At the time she had a choice between amputation or chemotherapy. Leah chose to undergo chemotherapy, which she continued for several years.

Despite undergoing treatment for Raynaud’s, because of the severity of her condition her rheumatologist strongly recommended that she relocate to a warmer climate to reduce the chances of her condition worsening. For Lupus patients in similar situations Leah advises, “Know your limitations and live within them.” So, in 2007 she made the move from her home state of New Jersey to start a new life in Georgia. After relocating to Georgia Leah connected with a new rheumatologist Sam Lim at Emory University School of Medicine.

This is when her clinical trial journey began. Leah credits Dr. Lim for encouraging her to get involved in clinical trials. The first study she joined was The Georgians Organized Against Lupus study, led by Dr. Lim at Emory University in 2013. The goal of this study is to better understand the burdens of Lupus. Leah has been involved in this study for the past several years, participating in in-person visits once a year and completing an online questionnaire twice a year. Leah also participated in another trial for Raynaud’s in 2015. This trial was studying the effects of Botox on individuals with Raynaud’s. As part of the trial she was asked to hold her hands under cold water and receive Botox injections. Despite the challenging experience, Leah is happy to have participated in this trial.

An experienced clinical trial volunteer, Leah’s advice to those thinking of participating is, “Just do it.” At the time of her diagnosis there were fewer medications available for individuals like Leah. Today, thanks to clinical trial volunteers, there is newfound hope for the Lupus community. To find trials for Lupus in your area visit CISCRP’s Search Clinical Trials page. For more information about Lupus, treatments, clinical trials, community forum and other educational information, please visit www.lupusresearch.org

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

 

Medical Hero Story: Sandy Morris, ALS Advocate

On January 6, 2018, at the age of 51, Sandy Morris was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS. ALS is a progressive nervous system disease that affects the nerve cells in your brain and spinal cord. The disease causes individuals to lose control of the muscles needed to move, speak, eat and breathe. According to the ALS Association, every 90 minutes someone is diagnosed with ALS and someone passes as a result of the disease. There is currently no cure for this debilitating disease. 

Sandy spoke candidly about the effects of ALS, “No one wants their body to trap them.” A mother of 3, she was determined not to give up hope. Following the advice of her best friend, she got involved in a clinical trial at the California Pacific Medical Center. As part of the trial, she had to undergo bone marrow extraction in order to retrieve stem cells which was followed by a series of infusions and lumbar punctures. Although the clinical trial involved invasive procedures, she describes her experience as an overall positive one. Regarding her participation Sandy stressed, “I would rather die trying. I don’t want to just accept my fate.” 

ALS affects everyone differently. Sandy explained, “How we progress is totally unique. I have some friends who can’t talk but can walk, and others who can walk but can’t talk.” For individuals considering participating in a trial, she stressed the importance of being well informed by researching the treatment being tested. Sandy shared her willingness to participate in future clinical trials and encourages others to educate themselves until ALS treatments and cures are found. She encourages others to get involved noting, “That’s the only way we’re going to move forward.” 

 There are currently four medications available to treat ALS. But more research remains to be done to find a cure. Despite ALS being a fatal disease, Sandy remains hopeful, “We just need a happy ending and we don’t have one yet.” Her advice for other ALS patients and their loved ones is to remain as positive as possible while learning to live with their disease, something she acknowledges is not an easy thing to do.  

Sandy discussed ways she wants to continue to make a difference including attending FDA meetings to share her experience and influence more efficient, humane clinical trial design. She also stressed the importance of pharmaceutical companies and patients working together to create clinical trials. Her goal is to create hope for the future. Sandy stressed, “I want to make sure that the next 51-year-old mother of three doesn’t have to hear she has ALS period. I want a comma, nothing finalized.” 

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.

Medical Hero Story: Nurse Katie Klatt & COVID-19

At the beginning of the pandemic in mid-March, Katie Klatt, a nurse on a COVID-19 infection control team, received the news that she had contracted the virus herself. “I wasn’t too surprised,” Katie said. “I kind of knew, but the actual confirmation was a little bit scary. It was early on so no one in the US really understood how bad it was.” A healthcare professional, Katie’s background includes working as a PICU nurse and she had just moved to Boston to pursue her Master in Public Health at the Harvard Chan School. Now fully recovered, Katie is a patient participant in a COVID-19 antibody clinical study. This is her story.

Katie contacted her primary care physician when she started having symptoms. “I was treated in two different ways. The first week I was seen via telehealth, and that was literally the same week that so many medical professionals and patients were turning to that option. My doctor was retiring, so I didn’t really have anyone following me. The onus was on me to check in and report my symptoms.” At the end of the first week, Katie was advised to be seen in person, at an urgent care clinic. However, being symptomatic, she could only be seen at the urgent care if she was a previous patient. Being new to the area, this was not the case. Her only other option was to go to an emergency room.

“At first, I didn’t think I was sick enough to go to the ER. I didn’t want to take an Uber and infect anyone else and I was too tired to ride my bike. So I waited until the Tylenol kicked in and walked 40 minutes to the hospital. At the emergency room, they were really well set up. When I walked in, people started to call ‘Rule out!’ which means a COVID-19 patient is entering the area, so people started to move away from me as I passed by. After I was seen, Security escorted me out the back door to protect other patients and staff,” Katie said.

The hospital pharmacy was closed, so Katie was handed a paper prescription to have filled elsewhere. Even though she was wearing a N-95 mask her mother had sent to her a few weeks before she got sick, Katie realized that she should not enter a store. She was also concerned about handing the paper prescription to a pharmacy technician. Katie called a friend who met her at the pharmacy with a clear plastic sandwich bag. She dropped the prescription in it and her friend brought it inside and had it filled.

In addition to having COVID-19, Katie also had a sinus infection. When she was diagnosed, Katie knew what to do. “Stay at home, isolate, hydrate and rest,” Katie stated plainly. “As a healthcare provider, we tend to minimize our own complaints because we’ve seen so much worse, so my view of it was skewed. Having a 103 degree temperature for 10 days, it was almost like I got used to having the chills and feeling exhausted constantly.”

Katie socially isolated from her roommates, staying in her room and only entering the kitchen when they were not present. “I had the presence of mind, despite the high fever, to clean everything I touched – that’s from my nursing background. I’m happy to say my roommates didn’t get the virus.” Family and friends sent care packages and checked in with phone calls and texts which helped buoy Katie’s spirits.

A few days after starting medication, Katie began to rapidly recover. She attributes this, in part, to being a lifelong athlete, playing in Australian and Gaelic football leagues. “When I got COVID-19, I lost about 10 pounds in a week and I lost a lot of my fitness. When my taste started to come back, I was able to eat more and work towards regaining my fitness.”

Katie is using her experience with COVID-19 to assist others. “A friend of mine who is a nurse told me about a clinical study, so I registered for it. The purpose of the study is to monitor levels of COVID-19 antibodies present to see how long they last in a recovered patient’s body. It’s a two-year commitment.”  On a monthly basis, Katie’s blood is drawn and analyzed. Currently, she has not been notified of recent results and she hopes to be informed soon.

In her role as a nurse on the COVID-19 infection control team at Boston Emergency Medical Services, Katie shares her story with EMTs and paramedics who have been exposed to or have contracted the virus while treating and transporting patients. “This is an isolating disease,” Katie explained. “Not having a stigma attached to it is important. It helps them when I explain what I went through when I was sick.”

When asked if she is concerned about contracting COVID-19 again, Katie said “I probably should be. I have reached the same fatigue that everyone in the world has now, around COVID-19. It’s hard to maintain that level of high alert. But I am being careful, more for others than for myself. I wear a mask everywhere, even when I am running outside. I do it because I don’t want anyone else to get it.”

Katie cautions others to be just as vigilant. “Just because we’re opening up, it’s not over. Wear a mask to protect yourself and others. Keep talking about it so that people don’t forget.”

To search for medical conditions in a specific location visit our Search Clinical Trials page.

To stay informed about clinical trials, visit our Resources page.