Support and resources

PTLD is a rare disease. It can be hard to find support or resources that are relevant or are shareable with others. This page has some starting points, so you don’t have to go through this alone.

Types of support to consider

Each person’s situation and needs are different, and may change over time. It can be hard to ask for help, but there are people who want to help.

Sources of help may include:

Your transplant team
Family and friends
Local or online communities
Nonprofit groups
Local support groups
Social workers
Therapists
Patient associations and patients groups

Educational support

Your transplant team is the best source of information. They can give you answers specific to you because they know about your transplant, immunosuppressants, and PTLD.

For caregivers

Caregivers may also need any of the supports above. If you are a caregiver, don’t forget to acknowledge your own feelings and reach out for help. Find time and space to rest and recover.

Practical support

Practical support means help for things in your day-to-day, such as:

Grabbing groceries.
Cooking.
Cleaning.
Rides to and from appointments.
Chores.
Checking mail.
Listening and taking notes at appointments.
Looking out for symptoms and side effects.

Getting help for some of these tasks can help you stay focused on treatment and recovery. Examples of people who might be able to provide support include:

Family.
Friends.
People in your community or neighborhood.
Hospital and patient associations groups.

General well-being

A new diagnosis can stir up a lot of emotions and stress. It’s normal to want help dealing with new information and situations. Let your transplant team know how you’re feeling (physically, mentally, and emotionally). They may recommend seeing a specialist based on your needs, e.g.,:

Physiotherapist or physical rehabilitation therapist.
Occupational therapist.
Mental health professional.
Registered dietician or nutritionist.

Other sources of support may include:

Support groups where patients can share personal experiences.
Nonprofit group resources for patients.

Questions you can ask your transplant team

Patient support and resources

Find PTLD patient support near you

Use the interactive map to find relevant PTLD patient group support organisations in your country.

Locations

AEAL

AEAL
Avda. de Córdoba, 15 - 2B
28026 - Madrid

Phone: 91 563 18 01
E-Mail: info@aeal.es
Website: https://www.aeal.es

FETCO

FETCO
c/ Isla Cabrera, 38 bajo dcha.
46026 - Valencia

Phone: 600 441 065
E-Mail: info@fetco.es
Website: https://www.fetco.es

La Lampada di Aladino

La Lampada di Aladino
Monza

Phone: 039 882505
E-Mail: info@lampada-aladino.it
Website: https://lampada-aladino.it

BDO – Bundesverband der Organtransplantierten e.V.

BDO – Bundesverband der Organtransplantierten e.V.
Postfach 1126
38711 Seesen

Phone: 05381 4921735
Fax: 05381 4921739
E-Mail: post@bdo-ev.de
Website: www.bdo-ev.de

Hubert Knicker

Hubert Knicker
Wikingerweg 6
32549 Bad Oeynhausen

Phone: 05734-666882
E-Mail: hubert.knicker@web.de
Website: www.Selbsthilfe-fuer-Menschen-vor-und-nach-Organtransplantation.de

Leukämiehilfe RHEIN-MAIN e.V

Leukämiehilfe RHEIN-MAIN e.V
Hasslocher Strasse 118
65428 Rüsselsheim am Main

Phone: 06142 3 22 40
Fax: 06142 17 56 42
E-Mail: buero@lhrm.de
Website: https://www.leukaemiehilfe-rhein-main.de

Sie erreichen uns telefonisch oder per Mail:
Mo – Do: 8:30 – 15:00 Uh, Fr: 8.30 - 12:30 Uhr
Besuche bitte nur nach vorheriger Absprache / Anmeldung

ALCER

ALCER
c/ Constancia, 35
28002 - Madrid

Phone: 915 610 837
E-Mail: informacion@alcer.org
Website: https://alcer.org

FNETH

FNETH
c/ Doctor Castelo, 31 - bajo D
28009 - Madrid

Phone: 917 396 872
E-Mail: secretaria@fneth.org
Website: https://fneth.org

UNIAMO

UNIAMO
Roma

Phone: 06440 4773
Phone: 06455 55179
E-Mail: segreteria@uniamo.org
Website: https://uniamo.org

Learn more about PTLD

Explore tools and resources to help understand PTLD.

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Glossary

Blood stem cell transplant. In a blood stem cell transplant, blood stem cells from a donor are put into your body through a central line. Blood stem cells are collected from three places:
- bone marrow
- peripheral blood
- umbilical cord blood
When the donated cells are in your body, they go through your bloodstream and into the bone marrow. In the bone marrow, they help create new, healthy blood cells. Blood stem cell transplant is also called allogeneic hematopoietic stem cell transplant, HSCT, or HCT.
Epstein‑Barr virus (EBV). EBV is one of the most common viruses that people can get. It is also known as human herpesvirus. Most adults will have had an EBV infection and carry EBV without any symptoms. EBV may cause symptoms in people with a weakened immune system.
- Epstein‑Barr virus (EBV) active state: When EBV is in its active state, it can make many copies of itself and spread. The active state is also called the lytic phase.
- Epstein‑Barr virus (EBV) dormant state: When EBV is in its dormant state, it does not make copies of itself and spread. It hides inside B cells and can cause them to multiply abnormally. T cells keep these B cells under control. EBV in its dormant state is harder for the immune system to detect and get rid of. This is how EBV can stay in the body without causing symptoms. EBV in its dormant state may become active again if the immune system is weakened. The dormant state is also called the latent phase.
Graft-versus-host disease (GvHD). Graft-versus-host disease is when the donor’s immune cells from the transplant attack your body.
Immunosuppressants must be taken to prevent this.
Immunophenotyping. Immunophenotyping is a lab test that tells white blood cells apart by the features or 'markers' on their surface. The results help doctors diagnose diseases like lymphomas and PTLDs. The test is done on tissue samples, like blood and bone marrow.
Lymphocytes. Lymphocytes are white blood cells. They are a part of your immune system. There are three main types: T cells, B cells and natural killer (NK) cells. Each type of lymphocyte protects your body from infections and diseases in its own way.
Lymphoma. Lymphoma is a type of blood cancer that begins in your lymphocytes. Lymphocytes are a type of white blood cell. There are two main types of lymphoma: Hodgkin lymphoma and non-Hodgkin lymphoma. Certain lymphomas that appear after a transplant are considered PTLDs.
Post‑transplant lymphoproliferative disease or disorder (PTLD). PTLD stands for:
- Post
- Transplant
- Lymphoproliferative
- Disease or Disorder
'Lympho' refers to lymphocytes, a type of white blood cell and 'Proliferative' means growing or multiplying quickly.
PTLD is when your lymphocytes grow out of control after a transplant. It can develop in anyone taking immunosuppressants after a transplant.
PTLD is a group of diseases. It includes certain kinds of growths and lymphomas. PTLD can become life-threatening. It needs to be brought up to the transplant team so they can diagnose and treat it quickly.
PTLD is often linked to the Epstein‑Barr virus (EBV). If there is a link, it’s called EBV‑positive PTLD. If there is no link, it’s called EBV‑negative PTLD.
Solid organ transplant. In a solid organ transplant (also called SOT), a whole or part of a healthy organ from a donor is put into your body.
The organs that can be transplanted are: kidney, liver, heart, lung, intestines and pancreas.
A multi-organ transplant is when more than one organ is transplanted.
T-cell removal. T-cell removal is the process of removing or reducing T cells from donor grafts in blood stem cell transplant. It is done to lower the chances of GvHD. T-cell removal is also called T-cell depletion.
Transplant rejection. Transplant rejection is when your immune system attacks the donor tissues or cells. Immunosuppressants must be taken to prevent this.
White blood cells. White blood cells are a part of your immune system. There are different types of white blood cells: granulocytes (neutrophils, eosinophils, and basophils), monocytes and lymphocytes (T cells, B cells, and NK cells). Each type of white blood cell protects your body from infections and diseases in its own way.