CATHY'S ITP JOURNEY
Welcome to this year’s Virtual Pump It Up For Platelets Fundraiser!
AKA, Cathy’s Birthday Fundraiser!
Unfortunately, we won’t be getting together in person again this year, but we’re still determined to do our best to continue spreading awareness about ITP. I greatly appreciate all of your love and support throughout my journey since I was diagnosed in 2006*.
*I had been feeling exhausted for months, and knew it had to be more than just being a mom to my four busy children. I had always been very healthy, so I was shocked to be diagnosed with SLE (lupus) and ITP, not just one, but two, autoimmune diseases. My days became filled with doctors appointments, labs, a bone marrow biopsy, treatments, infusion centers, and research. I've been hospitalized twice (with platelet counts under 10K), and have had many different treatments over the years...Rituxan, IVIg, Imuran, Cellcept, Dapsone, Prednisone, Myfortic.
As I reflect on my journey, I know it hasn’t been easy...the beginning was definitely a whirlwind of emotions and lifestyle adjustments. At the 10 year mark, I hit a low point...I was tired of dealing with my diseases. But, after I got over the “why me?!” moment again, I decided it was time to make changes. I worked with my hematologist/oncologist and rheumatologist to taper off all ITP and Lupus medications to see how my body would react with no treatments. Having tried so many different treatments, some concurrently, I really didn’t know what was working. I longed to be drug-free! This journey has been difficult, stressful, and tiring, but also, interesting, inspiring and amazing. I know that my journey is not over, and I remain hopeful.
2021 update: I am still on Myfortic, an immunosuppressant drug. In the past year, my platelet count has had its ups and downs, dropping down to 18K a few weeks ago, but, for the most part, has remained pretty stable around 50K (normal 150,000-450,000). I’m still extremely careful when I go out, but I’m hoping to get back to more traveling and foodie adventures again soon!
Discovering PDSA, and attending my first conference in Las Vegas in 2010, had such an impact on me. My husband, family, and friends were all so supportive, but here, I finally felt that I wasn't alone dealing with ITP. It was an incredible experience to be surrounded by others who understood, and were personally experiencing similar issues. I am so grateful to the amazing PDSA staff and medical advisors for their wealth of knowledge and involvement in this organization. PDSA held their second virtual conference last month. They did an amazing job delivering new information and updates from the medical advisors. Hopefully, we’ll be able to attend in person next year!
Thank you to PDSA for raising awareness and supporting people with ITP. I am so fortunate to have met so many strong, amazing people, and to be part of our local PSDA networking group in Orange County.
I hope you can support me by donating to my Virtual Pump It Up for Platelets birthday fundraiser, and help us to continue spreading the word on ITP awareness and PDSA! We can all make a difference! 💜
Cathy Aldama: Making a Difference
As volunteer members of PDSA’s ITP Patient Conference ambassador program, Cathy Aldama and her husband Raul help introduce first-time attendees to the conference and welcome them to the PDSA ITP community. Cathy knows what a difference it makes to meet others who share the very rare experience of living with ITP and she happily “pays it forward” in this special role. Connecting with others who personally understand the struggle of living with ITP is a highpoint for those who attend the annual ITP patient conference. Cathy, herself, found such comfort and hope when she first attended in 2010 and met other ITPers like herself a first since her diagnosis in 2006.
Cathy has come a long way since her initial diagnoses of both Systemic Lupus Erythematosus (SLE) and Immune Thrombocytopenia (ITP) in 2006 but she clearly remembers the fear and uncertainty she experienced when she first faced so many unknowns. Back then, Cathy and her husband were raising four young children and life was understandably busy and tiring. Cathy, however, had been far more tired than normal; spending most days pushing herself through unrecognizable exhaustion each day. Even naps proved ineffective in staving off her then-constant fatigue. Worried there was something more behind it, Raul urged Cathy to see her physician. She met with her OB/GYN first who, after learning how Cathy was feeling, ordered a full blood work-up and lupus profile. The doctor suspected that Cathy had lupus, and her initial CBC test and screenings pointed in the same direction. She was then referred to a rheumatologist who eventually would confirm the diagnosis of SLE, Systemic Lupus Erythematosus. But Cathy’s platelet count was still extremely low, and the rheumatologist wanted her to see a hematologist/oncologist for a bone marrow biopsy to rule out the possibility of bone cancer. When that test came back negative, the hematologist diagnosed Cathy with a secondary condition of ITP.
In a matter of months, Cathy’s life had been turned upside down. She recalls her initial reaction, “In some ways, I was glad to know what was going on, but I didn’t know which way to turn. I mean, lupus is something I at least knew of. But ITP? I’d never heard of it.”
Cathy’s medical team immediately turned to a prednisone treatment to address her low platelet count. Though her platelets continued to fluctuate, dipping as low as 3,000 and 6,000 for which she was hospitalized twice respectively, the prednisone seemed to be offering some overall stabilizing effect. Unhappy with the side effects of the treatment, however, Cathy and her doctor attempted to wean her off this corticosteroid several times over the years. Each attempt caused her platelets to plummet. Other recommended ITP treatments were tried to no avail, so she continued with the prednisone. Her dual diagnosis complicated things and coordinating treatment between doctors for both Lupus and ITP was an ongoing challenge and full-time job. It was difficult to find and maintain the right balance.
Shortly after her ITP diagnosis, Cathy was researching her condition on the internet when she found the PDSA website. “It was really helpful. There was so much valuable information and I read it all, from medical articles to everything people posted on the message board, and I would check back all the time to see what was new.” When PDSA’s national ITP Patient Conference was held in Las Vegas, just a short distance from their home in Orange County, California, Cathy and Raul decided to attend. It was a life-changing experience and they have attended every conference since, except two when Cathy’s health prevented it. Cathy summarized her commitment to attending the conference: “What stands out about the conference is meeting other people with ITP. Up until then, and up until today, I have never met anybody else, other than through PDSA, who has ITP. Meeting other patients and talking with them, finding out how they were diagnosed, it’s like automatically connecting. We understand what each of us is going through.” In addition to connecting with other ITP patients, Cathy and Raul find great value in attending the conference to hear from and speak with PDSA’s Medical Advisors, an internationally recognized group of specialists in the field. “It’s amazing to see how much the PDSA Medical Advisors are willing to help. My doctor has only treated about a dozen patients with ITP. He admits he’s not an expert on it because he’s never had a consistent caseload of patients to keep him current and up on new treatments. We go to the conference, learn what’s new, and then I share it with him.”
Through her attendance at the 2011 ITP Patient Conference in Boston, Cathy had the great opportunity to meet other ITP warriors from Orange County. Back at home, she joined them to participate in a 5k fundraiser for PDSA. Soon after, the Orange County ITP support group was established. Today, she is one of four individuals who actively facilitate this support group and who host the annual 5k fundraiser, a popular and successful event. In fact, theirs is the longest running event among the many PDSA walk/run locations. From Cathy’s perspective, supporting PDSA as a volunteer and fundraiser is mutually beneficial. “By helping PDSA, I’m actually helping myself. In the world of ITP, PDSA is it. There is no one else who gathers all the information on ITP and who focuses on ITP patients like they do.”
She is honored to be able to give back to PDSA and enjoys her service and engagement. “I feel PDSA has done so much for me because it made me feel like I wasn’t alone with my ITP. If there is anything I can do to help or make a difference, I’ll do it.” Her passion for making a difference is now also shared by her daughter, Emily, who serves at the annual conference as a Kids Kamp volunteer! Additionally, Cathy’s family and friends followed her selfless request to help celebrate her 60th birthday this year not with gifts for her, but with donations to PDSA. When asked what advice she might give to other ITP patients, she offers meaningful insight: “If you don’t take the time to educate yourself and find out about everything that’s out there about ITP, you’re doing yourself a disservice. You have to be informed so that you can make informed decisions with your medical team. You have to advocate for yourself and know what is going on in the ITP world so you can make the best decision for your own treatment. If you leave it all to your doctors, you’re removing yourself, and what you know about yourself, from the treatment equation.”
Since her diagnoses in 2006, Cathy has come to understand her body and the two rare diseases that battle within her. For more than a decade, she spent most of days managing treatments for both her SLE and ITP and worrying about what one condition’s treatment would do for the other. Years of prednisone treatment had also taken its toll and she was facing very real issues with cataracts and osteoporosis as a result. Cathy was exhausted, and she knew her mind and body needed a break. At the ITP patient conferences, she consulted PDSA’s Medical Advisors frequently for their thoughts on her desire to be taken off her many medications. With their thoughtful support and the assistance of her physicians back home, Cathy deliberately and slowly weaned herself from the prednisone first and, eventually, pulled back from her other treatments as well. While her transition from all medications was successful, Cathy continues to battle inflammation and, on occasion, must receive IVIg treatments to stabilize her platelets.
As Cathy explains, her plan was carefully measured and executed. “After 10 years on prednisone and other meds, it was my years of attending the conferences and talking to the medical advisors about my issues that gave me the strength to realize I really needed to jump in and advocate for myself and make a big change, and their input was critical in my decision making and the treatment plan that I made with my doctors. Without PDSA, I might still be battling more treatment side effects. Fortunately, I’ve never been a ‘bleeder,’ but I do bruise. And we’ve learned that, for the most part, I remain stable around 50,000 now. And I’m doing just fine.”
Cathy has taken ownership of her condition and is determined to “not be trapped by CBC tests, counts, and concerns.” She reports that she feels better since releasing herself from some of her everyday stressors, and she and her family are now spending more time living and traveling. “Travel does so much for the body and the soul. It clears my mind, so I don’t have to always think about all this stuff. Believe me, I know my ITP is still there. It never really leaves your mind completely, but it’s good to get away and to take a break.” Her husband Raul seconds Cathy’s sentiment: “ITP is an overwhelming diagnosis, and it takes time to get to the point where you understand that you can live with ITP and that you’ve got to make the best of it. You’ve got to do your best to go on with life.”
We are proud to share this story of yet another ITP warrior who has set out to make a difference for others. Our many thanks to Cathy and her family for their meaningful service to PDSA and to the ITP patient community!
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