Blood Conditions


Hemophilia

Read this blog about a family who has adopted a child with hemophilia:

Saving Kyle

Hemophilia is a rare bleeding disorder in which a person’s body does not make enough of one of the proteins (clotting factors) necessary for blood to clot effectively. This means that individuals with hemophilia bleed longer than a typical person, but they do not bleed faster than others. Thus, children with hemophilia bruise more easily than other children, and may experience more mouth and nose bleeds than other children. Health concerns include joint bleeds and intramuscular bleeds that can cause joint and muscle damage. Internal bleeding and intracranial bleeds can be life threatening. These concerns can be managed with treatment.


hemophilia1


 

Hemophilia is genetic and is most common in boys, though girls can carry the gene and can, on rare occasions, have hemophilia, too. Girls who carry hemophilia can also have symptoms.

The most common type is Hemophilia A (Factor VIII deficiency) with three levels of severity:

– Mild (5-50% of normal Factor VIII levels)
– Moderate (1-5% of normal factor VIII levels)
– Severe (less than 1% of normal Factor VIII levels)

A person’s level of clotting factor typically does not change throughout life, so a child’s severity level will likely remain constant through his or her lifespan. The most common treatment is factor replacement therapy, which is when concentrates of the missing clotting factor are infused into the bloodstream intravenously (either into a vein or through a port, depending on the treatment route a family chooses). Children who have mild and moderate hemophilia are typically treated “on demand” and clotting factor is infused when needed to treat a bleed or injury. The standard of care for children with severe hemophilia is prophylactic clotting factor replacement, and they receive infusions of their missing protein on a regular schedule of two, three, or more times per week.

Sometimes, a rare complication of hemophilia arises when a person’s body develops antibodies to the clotting factor infused in replacement therapy, rendering it ineffective in supporting clotting; this is called an inhibitor, which can be managed with treatment. Infusions take very little time, so life for a child with hemophilia looks much like that of any other child. They can go to school, participate in sports activities (contact sports are strongly discouraged), run, and play like other children. Without treatment, the life expectancy for a person with hemophilia is about 24 years. However, with proper treatment a person with hemophilia lives a typical, full lifespan.


hemophilia


 

Resources:
Kelley Communications
Hemophilia Mother Facebook Group
Adopting a Child with Hemophilia
Love Without Boundaries: Adopting a Child with Hemophilia
Adopted Into Hemophilia
Infusing Love
National Hemophilia Foundation’s Steps for Living
Hemophilia Adoption Facebook Group

Read blog posts about Hemophilia on No Hands But Ours.


Idiopathic Thrombocytopenia

Visit these blogs to read about families who have adopted a child with this special need:

Increasing Our Hearts and Home
Seriously Blessed

Idiopathic thrombocytopenia (ITP) is a bleeding disorder. In ITP, the blood doesn’t clot as it should. This is due to a low number of blood cell fragments called platelets or thrombocytes. Platelets are made in the bone marrow along with other kinds of blood cells. They stick together as clots to seal small cuts or breaks on blood vessel walls and stop bleeding. Without enough platelets, bleeding can occur inside the body (internal bleeding) or underneath or from the skin (external bleeding).

Children who have ITP often have purple bruises called purpura. These bruises appear on the skin or mucous membranes (for example, in the mouth). Bleeding from small blood vessels under the skin causes purpura. People who have ITP also may have bleeding that causes tiny red or purple dots on the skin. These pinpoint-sized dots are called petechiae which may look like a rash. People who have ITP may also have nosebleeds, bleeding from the gums during dental work, or other bleeding which hard to stop. Teen girls and women who have ITP may have menstrual bleeding that’s heavier than normal.

untitled
(Image source)

In most cases, an autoimmune response is thought to cause ITP. Normally, your immune system helps your body fight off infections and diseases. But if you have ITP, your immune system attacks and destroys its own platelets. The reason why this happens isn’t known. ITP can not be passed from one person to another.

The two types of ITP are:
Acute ITP (temporary or short-term) generally lasts less than 6 months. It mainly occurs in children—both boys and girls—and is the most common type of ITP. Acute ITP often occurs after a viral infection.
Chronic ITP (long-lasting) lasts 6 months or longer and mostly affects adults. However, some teenagers and children do get this type of ITP. Chronic ITP affects females two to three times more often than males.

Treatment depends on the severity of bleeding and the platelet count. In mild cases, treatment may not be needed. For most children and adults, ITP isn’t a serious or life-threatening condition. Acute ITP in children often goes away on its own within a few weeks or months and doesn’t return. In 80 percent of children who have ITP, the platelet count returns to normal within 6 to 12 months. Treatment may not be needed. For a small number of children, ITP doesn’t go away on its own and may require further medical or surgical treatment. Chronic ITP varies from person to person and can last for many years. Even people who have severe forms of chronic ITP can live for decades. Most people who have chronic ITP can stop treatment at some point and maintain a safe platelet count.


itp


 

Resources:
Platelet Disorder Support Association
PDSA Facebook Page
ITP Kids
ITP Foundation
ITP Yahoo Group

Read blog posts about ITP on No Hands But Ours.


Phenylketonuria

Visit the blogs of families who have adopted children with Phenylketonuria:

Bring Fanni Home
Ourlittlestmatryoshka
Two Dig to China

Other PKU Families:

Love Pink Roses
Raising Baby Caroline
The McDowell Family Adoption Journey
PKU Proud


 

10563494_733953576640277_668750320_n


 

Phenylketonuria (PKU) is a rare genetic metabolic disorder in which the body doesn’t properly break down the amino acid phenylalanine. PKU occurs in approximately 1 in 15,000 live births in the US and Asia, 1 in 240,000 in Africa, and 1 in 7,000-14,000 in Eastern European countries. In some countries newborns are screened for PKU at birth. In recent years there has been a movement in China for newborn screening, however, it remains expensive and unavailable in some areas.

Children with PKU who are diagnosed early in infancy and follow a strict low phe or low protein diet usually live healthy, active lifestyles. Symptoms can occur if the child is diagnosed later or does not follow the low protein diet. Symptoms can range anywhere from seizures, mood swings, developmental delays, to brain damage. Treatment for PKU includes a special low phe/protein diet and metabolic formula combined with regularly scheduled blood samples to check blood phe levels.


Sources:
PKU.com
The Essentials of PKU
PKU News
National PKU Alliance
Cook for Love
Nutricia Metabolics
Cambrooke Foods
PKU Perspectives

Read blog posts about Phenylketonuria on No Hands But Ours.


Thalassemia

Visit these blogs of families who have adopted children with thalassemia:

A Mountain Awaits
There’s No Place Like Home
Sing a Song of Six Kids
Linguine or Lomain
Crazy Life of the Wilks Family
It’s A Merciful Life
Bringing Home Logan
House of Payne


Thalassemia is the name of a group of genetic blood disorders prevalent in Southern China which impact the production of healthy red blood cells. Hemoglobin is the oxygen-carrying component of the red blood cells consisting of two different proteins, an alpha and a beta. If the body doesn’t produce enough of either of these two proteins, the red blood cells do not form properly and cannot carry sufficient oxygen. The result is chronic anemia that begins in early childhood and lasts throughout life. Thalassemia is a chronic medical condition, it is incurable at this time (although there is research being conducted), and it requires lifelong medical care (source).


 

Kate and CB


There are various types of thalassemia, which result in several degrees of severity and treatment modalities. The most severe form is Beta Thalassemia Major which requires scheduled blood transfusions every three weeks and daily medication to rid the body of excess iron deposits. For more information on the different types of thalassemia visit this site.

Children with thalassemia are bright, joyful, and a delightful addition to any family. They thrive and lead full lives. There is an extremely supportive community of adoptive parents of children with thalassemia in the US. They are a wealth of knowledge for anyone pursuing adopting a child with this special need.

The adoption of children with Thalassemia is vital. Treatment for thalassemia in China is difficult due to a severe blood shortage and the lack of essential medications. The life expectancy for these children if they remain institutionalized is very grim.


IMG_0102


 

Resources:
Cooley’s Anemia Foundation
Choosing Thalassemia
Rainbow Kids: Top Ten Questions Family Ask About Thalassemia
Yahoo! Group – Adopting Thalassemia
Yahoo! Group – Thalassemia Parents
Facebook Group – Parenting Thalassemia
About Thalassemia (video cartoon for kids)
Thalassemia Treatment Centers
Transfusions for Two: Crazy Life of the Wilks
All I Need: Daniel’s Story

Read blog posts about Thalassemia on No Hands But Ours.


© 2017 No Hands But Ours

The content found on the No Hands But Ours website is not approved, endorsed, curated or edited by medical professionals. Consult a doctor with expertise in the special needs of interest to you.