For many years, sickle cell disease was largely considered a children’s condition. At the Penn Comprehensive Sickle Cell Program, we’re changing that view, with care that meets adults’ unique needs and dispels hurtful stereotypes. We treat you with respect and value your trust.
We’re a reliable home for adults seeking the complete range of sickle cell disease services they deserve. We also help young adults ready to move on to adult care. We provide the latest treatments and embrace a wider view of what sickle cell disease care should include.
Why Choose Penn Medicine for Sickle Cell Disease Treatment?
The experience of sickle cell disease is different for each person. We work to individualize the care we provide, taking into consideration how it relates to you and your life.
Regardless of your situation, we know that a comprehensive approach is the best way to support your goals. We want you to live as normal a life as possible, with the ability to go to school or work and raise a family.
By choosing our program, you can count on:
- Expert sickle cell disease team: Like other teams at Penn Hematology, our program offers a high degree of expertise. The hematologists (blood doctors) in our program are leaders in adult care for sickle cell disease. They’re joined by experienced nurses and nurse practitioners. Learn more about the hematologists at Penn Medicine.
- Complete healthcare: We support your overall health. Everyone receives a pain plan and the chance to work with our pain psychologist. For acute complications — those that happen quickly — we promptly identify the problem and respond. To watch for long-term, chronic complications, we guide you to partners in other specialties. With people now living longer with sickle cell disease, these challenges have more time to emerge.
- Full support: Sickle cell disease can introduce challenges that are not always physical. Our team includes specialized social workers and a psychologist who are always ready to help you. We also organize a private support group that meets regularly.
- Easier experience: We try to make your medical experience as easy as possible. A nurse navigator helps arrange your care. We also have a specialized center to give medications when people need urgent pain relief. And we offer a seamless transition program for younger people moving to adult care.
- Extra help during pregnancy: In addition to our standard care, we help people manage the effects sickle cell disease can have on them and their babies during pregnancy. Because sickle cell disease is an inherited condition, we also provide support for family planning.
- Leading innovation: We work with other centers to better understand how sickle cell disease harms the body and how to prevent those effects. We also participate in clinical trials to develop new treatment options, including gene therapy. Learn more about our clinical trials for sickle cell disease.
Starting Sickle Cell Treatment at Penn
Some people come to us after an emergency room visit, by referrals from other doctors, or through our community partners. Others choose to transition to our program as they approach adulthood, after years of pediatric care.
Whether you’re ready to move to adult care or want a new approach after decades with sickle cell disease, we can help. We move at your pace and help you find care that works for you.
When you choose to come to our program, you can expect to:
- Receive help from a dedicated nurse navigator: Our nurse navigator reaches out right away to discuss your health history and identify any immediate challenges you may need help with. The navigator will also let you know what medical records we need and how to share them with us.
- Meet the team at your first visit: During your visit, you’ll meet your new doctor. You’ll also meet our nurses, one of our social workers, and our psychologist. You’ll get blood drawn for testing and we’ll review your medical records and discuss the care we can provide.
- Come back for blood work results: We ask you to return in about four to eight weeks to discuss blood test results and continue creating a care plan, including a pain plan.
- Schedule follow-up visits: For most people, we recommend follow-up appointments every three months, though sometimes they’re more or less frequent. At each visit, you have access to our whole team — not just the doctor and nurses — to address your needs.
Pediatric Transitions
We work closely with the Sickle Cell Center at Children’s Hospital of Philadelphia to make transitions seamless. But we encourage anyone who is moving from pediatrics to consider our program, even if you’ve received care at another center.
Our team meets with teens at CHOP before they make the switch, to identify their needs and help them prepare. Our doctors discuss medical care, while our social workers talk about additional ways we can help and our nurse navigator works out the details. Together, our team helps teens feel supported and ready to take a more active role in their healthcare decisions.
Treating Sickle Cell Disease With Medications
Recent years have seen significant improvement in treating sickle cell disease as new medications have become available. We now offer drugs that change the course of the disease for many people, particularly those with more severe forms. Several medications help prevent vaso-occlusive episodes (VOEs) — pain flare-ups from misshapen blood cells blocking blood flow.
We have the experience to use these medications safely and effectively. We fully discuss the potential benefits and side effects of each option with you. Our nurses can also help find ways to make medications more affordable.
Gene Therapy for Sickle Cell Disease
Gene therapy adds, deletes, or corrects genes to change the instructions guiding the body.
With sickle cell disease, researchers believe gene therapy may produce red blood cells that don’t change shape. With enough healthy red blood cells, symptoms would become much more controlled and some people might even experience a cure.
At Penn Medicine, we’ve participated in clinical trials looking at gene therapy for sickle cell disease and are excited about its potential. If the final review process leads to Food and Drug Administration approval, we plan to offer it as soon as possible.
Stem Cell Transplants for Sickle Cell Disease
Until recently, the only potential cure doctors could offer for sickle cell disease was transplanting blood-producing stem cells from a donor. These procedures can be risky and difficult to find the right match. Stem cell transplants are mainly used for children with severe complications.
How We Help You Live Well With Sickle Cell Disease
We recognize that sickle disease is a challenging condition that can affect many parts of your life. While we focus on relieving your pain, we also work to prevent other complications and provide additional support to make your life easier. We know your experience with sickle cell disease can change over time and we help you adjust.
Relieving Sickle Cell Disease Pain and Supporting Mental Health
Unfortunately, it’s common to experience pain with sickle cell disease, especially with severe forms. You may have chronic pain lasting months or longer. You may also get acute pain that comes on suddenly.
We know living with pain is challenging, so we help with all the ways it can affect your life. Our team provides a range of pain relief resources, both inside and outside the hospital.
With our program, you have access to:
- Pain management plans for at-home relief
- Psychologists that specialize in pain relief
- Urgent pain control, with support from emergency care and our specialized infusion center
Protecting Organs and Overall Health
While there is still more to learn, we do understand many ways sickle cell disease can harm the body. Mishappen red blood cells don’t live as long as normal cells, potentially limiting the ability to deliver oxygen and causing anemia. They can also block and damage blood vessels and collect in organs.
These complications have led to updated care guidelines. For example, people with sickle cell disease can get kidney transplants when needed.
Preventing or treating complications involves several approaches. You may need transfusions, either basic injections of donated blood or apheresis to remove and replace red blood cells. We may also recommend transfusions during pregnancy or before surgeries. The donated supply comes from the hospital’s blood bank, which closely follows all safety measures. Experienced doctors and nurses perform special testing and follow the latest guidelines to avoid negative reactions to donor blood.
Care for complications may also involve other Penn Medicine specialists. Doctors and nurses can help manage hypertension (high blood pressure), which can worsen complications. Other partners may include:
Social Work Support
We know sickle cell disease can impact many areas of your life — and that sometimes those areas also affect your healthcare. Our social workers can help with resources and support specifically for people with sickle cell disease. They often stop by during appointments, and you can always ask to speak with them. They may also follow-up with you by phone.
Areas our social workers can help with include:
- Community resources
- Education and absences from school
- Employment and employee rights
- Government support for disability benefits
- Transition to adult care
Make an Appointment
Please call 800-789-7366 or make an appointment.