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  • 2015-2016 Thalassemia Outreach Intern Team
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  • New multidisciplinary center for Alpha Thalassemia Major
  • Twin girls from China reunited at our thalassemia center
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  • Focus on Alpha Thalassemia, by Ash Lal MD
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  • Thalassemia Fact Sheet
  • Thalassemia: The Passion to Help Others
  • Thank you, Italian Catholic Federation (ICF)!
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2015-2016 Thalassemia Outreach Intern Team1 Sign up for our newsletter2 New multidisciplinary center for Alpha Thalassemia Major4 Twin girls from China reunited at our thalassemia center5 Slides: Seattle thalassemia patient and family conference6 My Experience iwth Gene Therapy7 How you can help8 Visit our Facebook page9 Focus on Alpha Thalassemia, by Ash Lal MD10 Painted Turtle Camp July 17-2211 Thalassemia Fact Sheet12 Thalassemia: The Passion to Help Others13 14 Thank you, Italian Catholic Federation (ICF)!14 15 slideshow jquery by WOWSlider.com v8.2

Living with Thalassemia

Living with Thalassemia
▶ Life Stages:
  1. Infancy
  2. Toddler
  3. School Years
  4. Adolescence
  5. Adulthood
▶ Nutrition
▶ Immunization
▶ Fertility/Pregnancy
▶ Patient Stories
▶ Resources and Support:

Fertility and Pregnancy

mother and babyDelayed puberty and primary or secondary amenorrhea due to iron overload are common complications in transfused thalassemic females. Iron can cause damage to the hypothalamicpituitary axis and possibly to the ovaries and testes. As with prevention of other endocrinopathies, it is important to ensure adequate chelation starting in early childhood and through adolescence. (Also see Section 9.2.4, regarding evaluation of adolescent females and males with delayed puberty due to endocrinopathy.)

Adult fertility status in both genders may be assessed by testing LH, FSH, and estradiol in females (can be tested at any time if females are menstruating) and LH, FSH, and testosterone in males. Obtain free T4, TSH, ACTH, and cortisol stimulation tests to assess central hypothalamic-pituitary axis function. In females with amenorrhea, obtain prolactin levels.

If gonadotropins (LH, FSH) are elevated, there has been primary testicular or ovarian failure. If LH, FSH, and estradiol or testosterone are low, there is likely a hypothalamic-pituitary axis failure or secondary failure. However, in this situation, the presence of ovarian or testicular failure cannot be ruled out in addition to the pituitary failure. If pregnancy is sought, additional evaluation and treatment require referral to a reproductive center.

In the past, pregnancy was uncommon and often discouraged because of risk. Now, with improved treatment including transfusion and chelation, pregnancies are relatively common. Both spontaneous pregnancies and in vitro fertilization have been successful. Pregnancy even in patients who develop amenorrhea is being observed. Pregnancy in a patient with thalassemia is high-risk and requires multidisciplinary management. Deaths due to cardiac failure occur.

Patients with cardiac disease and significant cardiac iron are at particular risk. Optimal transfusion therapy and iron control should be established before pregnancy. There is limited data on iron chelators administered during the first trimester, and risks do exist. While iron chelation during pregnancy should generally be avoided, normal births have occurred in mothers on chelation.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3651   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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