SCID

Book summary of baby that needs bone marrow transplant (not for SCID) explains mom’s feelings over a sick child. (mother is author, Heather Harpham)

When Amelia was born on March 30, 2001, she looked perfectly healthy; but hours after her birth, doctors realized something was malfunctioning in her blood. She had her first transfusion within the first week of her life, and it would be the start of a scary routine that spanned her next three years. Unable to produce sufficient red blood cells, the baby needed transfusions about every three weeks.

After each transfusion, Amelia would look pink and healthy. But that energy would drain like a battery, and she would turn wan and listless until the next one. The family was told that becoming reliant on transfusions could eventually prove lethal.

Doctors were certain of one thing: Amelia would be cured by a bone marrow transplant.

Hers was a harrowing experience riddled with frightening prognoses and statistics. One doctor predicted she had only a 50 percent chance of living past the age of 29. Her mother, Heather Harpham, has chronicled it all in a memoir, “Happiness: The Crooked Little Road to Semi-Ever After”

How New York Post readers helped save a toddler’s life Amelia-Grace Harpham is a 16-year-old with wild, wavy hair and a love of reading. She prefers sci-fi shows like “Dr. Who” and “Star Trek” to the usual teen fare. And the rising junior at Hastings H…

Coronavirus (Covid-19) and IDF

Together, We Can Make a Difference | Immune Deficiency Foundation This is an extraordinarily difficult time that has left many of us asking, “What more can I do? How can I help?” IDF is about to start a COVID-19 & PI survey project that is anticipated to run throughout the pandemic; there is an urgent need to understand the impact on those with PI. The project...

CORONAVIRUS UPDATE

It is believed but not proven that people with PID are more vulnerable to COVID-19. Therefore, patients must be vigilant and take every precaution, especially if they live in areas where there are many cases of COVID-19.

Patients should remain on current therapies/medications unless their doctor who has expertise in primary immunodeficiency disease recommends a change.
Patients should keep handy the details of their primary immunodeficiency disease diagnosis, medical charts, and medications, as well how to reach their PID expert doctor and an emergency contact.

It is not recommended that PID patients without COVID-19 symptoms or limited symptoms get tested for the virus. In most nations, people with chronic illness – including PID – are not being treated or managed differently than the rest of the population.

Patients who get sick with a suspected infection should quickly call their doctor. If a patient consults a general practitioner, the patient should also ensure that he or she coordinates with their specialist in primary immune deficiency disease.

ipopi.org

Global Level 3 Health Advisory - Reconsider Travel - ESPECIALLY RELEVANT FOR IMMUNE DEFICIENCY PATIENTS

The Department of State advises U.S. citizens to reconsider travel abroad due to the global impact of COVID-19. Many areas throughout the world are now experiencing COVID-19 outbreaks and taking action that may limit traveler mobility, including quarantines and border restrictions.Even countries, jurisdictions, or areas where cases have not been reported may restrict travel without notice.

For the latest information regarding COVID-19, please visit the Centers for Disease Control and Prevention¿s (CDC) website.

You are encouraged to visit travel.state.gov to view individual Travel Advisories for the most urgent threats to safety and security.Please also visit the website of the relevant U.S. embassy or consulate to see information on entry restrictions, foreign quarantine policies, and urgent health information provided by local governments.

Travelers are urged to enroll in the Smart Traveler Enrollment Program (STEP) to receive Alerts and make it easier to locate you in an emergency.The Department uses these Alerts to convey information about terrorist threats, security incidents, planned demonstrations, natural disasters, etc.In an emergency, please contact the nearest U.S. Embassy or Consulate or call the following numbers: 1(888) 407-4747 (toll-free in the United States and Canada) or 1 (202) 501-4444 from other countries or jurisdictions.

If you decide to travel abroad:

Review and follow the CDC¿s guidelines for the prevention of coronavirus.
Check with your airlines or cruise lines regarding any updated information about your travel plans and/or restrictions.
Visit travel.state.gov to view individual Travel Advisories for the most urgent threats to safety and security.
Visit our Embassy webpages on COVID-19 for information on conditions in each country or jurisdiction.
Visit the Department of Homeland Security¿s website on the latest travel restrictions to the U.S.

Travel Links to external websites are provided as a convenience and should not be construed as an endorsement by the U.S. Department of State of the views or products contained therein. If you wish to remain on travel.state.gov, click the "cancel" message.

IDF Statement on Coronavirus | Immune Deficiency Foundation Many of the inquiries that we’re receiving are related to individual situations about medications or medical care. These inquiries should always be directed to a physician. The IDF team is following the situation very closely and will continue to provide updates as needed. At the current time, all...

Coronavirus update ;

Joint statement on the current epidemics of new Coronavirus SARS-CoV-2 — COVID-19
From IPOPI, ESID, INGID, APSID, ARAPID, ASID, CIS, LASID, SEAPID (2020, 11th March).

The recommendations for Immunodeficiency patients:

There is currently no data pointing to whether PID patients are actually at higher risk of more severe disease from COVID-19 (as per the WHO, CDCs and PID expert healthcare professionals and NMO representatives along with patients themselves).

However, it is believed that PID patients might be at higher risk for this infection or a more severe course of the disease. Thus, patients with PID need to take extra care to prevent from getting this infection.

Patients with PID living in areas of high prevalence should take every precautions and adhere to local, regional and national recommendations (staying at home, teleconsultation, work from home, etc..).

However, for PID patients, beyond the precautions mentioned above, we advise prompt phone contact with a doctor if an infection is suspected (should it be your PID expert, or your GP who should let your PID expert know about your condition in order to provide the best advice for each PID patient’s specific condition). Patients should always keep the details of their PID diagnosis and medical charts, medications, PID expert doctor and next of kin at hand, in case urgent medical care is needed.

PID patients with lung and/or heart complications, solid organ transplants PID patients recipients, recent recipients of hematopoietic stem cell transplantation or gene therapy, PID patients undergoing treatment for a cancer (malignancy), as well as patients under immunosuppressive or immunomodulatory drugs (for autoimmune or inflammatory or autoinflammatory complicating the PID course) should remain on their specific therapy until recommended otherwise by their PID expert physician. Immunosuppressive drugs (in particular corticosteroids), might limit signs of infections (fever and other clinical symptoms). It is this recommended to contact your PID expert physician in case of unexplained change in clinical status including your well-being.

PID patients with significant respiratory issues (severe asthma, bronchiectasis or chronic respiratory failure) should receive special attention (as for any risk of respiratory infection).

Keep in mind that it is always essential to regularly continue to take the treatment for your PID.

Plasma Derived Medicinal Products (PDMPs), such as immunoglobulins (IVIG or SCIG) are safe and will protect you from many other infections.

For everyone, including PID patients, we strongly recommend you to keep aware of the latest information on the COVID-19 outbreak in your region, for example provided by the World Health Organization (WHO), the European Centre for Disease Prevention and Control (ECDC) and by your national and local public health authorities.

Plasma Derived Medicinal Products (PDMPs), including Immunoglobulins
According to a statement from Plasma Protein Therapeutics Association (PPTA) there is no risk of transmission of COVID-19 into PDMPs.

For PID patients who are on immunoglobulin replacement therapy, there is no evidence to date that more frequent dosing of immunoglobulin will offer more protection. Whilst immunoglobulin replacement therapy provides protection against a range of infections, it does not guarantee immunity against coronavirus.

For PID patients whose condition does not require to be under regular Ig replacement therapy, there is no need to start Ig since there should be no antibodies targeting COVID-19 is expected to be contained in the existing preparations.

There is no recommendation to give immunoglobulins to the general population to protect or treat people against COVID-19.

We should stress the fact that only your PID expert would know best what to recommend to you.