概述
What is Acute Hepatic Porphyria
Acute hepatic porphyria (AHP) refers to a family of rare genetic diseases characterized by potentially life-threatening attacks and, for some people, chronic debilitating symptoms that negatively impact daily quality of life.
There are 4 types of AHP:
- Acute intermittent porphyria
- Variegate porphyria
- Hereditary coproporphyria
- ALAD-deficiency porphyria
How common is Acute Hepatic Porphyria
There are an estimated 3,000 to 4,000 patients living with AHP in the United States.
Questions regarding your Acute Hepatic Porphyria?
You can reach the Accredo Acute Hepatic Porphyria care team, anytime, day or night, seven days a week by phone or online.
24 小时客户服务中心
症状
What are the symptoms of Acute Hepatic Porphyria
Signs and symptoms of Acute Hepatic Porphyria may include:
- 腹痛
- Nausea, vomiting, constipation or diarrhea
- Numbness, tingling, or burning sensation in the feet or hands
- Muscle weakness
- Elevated heart rate and blood pressure
如何诊断
Diagnosis can be difficult because the most common symptoms, such as unexplained abdominal pain, neuropathy, and psychological changes, are not specific to porphyria. If your doctor suspects that you have AHP, he or she will want to review your medical and family history, perform a physical exam and perform one or more diagnostic tests. When AHP is suspected, a urine porphobilinogen test should be obtained to confirm the diagnosis. Once a diagnosis is made, a porphyrin test, either urine or plasma, can be used to determine what type of AHP you have.
药品
Acute Hepatic Porphyria
The following specialty medications are available at Accredo, a specialty pharmacy for Acute Hepatic Porphyria .
节约护理费用
您还可获得经济援助，以承担您的部分药品费用，包括生产商和社区计划。Accredo 专家可以帮助您找到适合您的计划。
财政指导
急救性质的特殊药品很昂贵。通过此视频，了解 Accredo 团队如何帮助个人找到可以负担他们救命药品费用的方式。
查找支持
有许多组织为家族性高胆固醇血症的研究和宣传以及心脏病患者信息提供支持。下面是其中部分组织。
支持组织
- American Porphyria Foundation | 866-273-3635
- United Porphyrias Association | 800-868-1292
- NORD (National Organization for Rare Disorders)
政府组织
团队介绍
Accredo’s Acute Hepatic Porphyria team is dedicated to serving you and we understand the complexity of your condition. 我们的特殊培训临床医师每周 7 天、每天 24 小时为您提供服务，以回答您的任何问题。
我们为什么要这样做
Accredo 为慢性和复杂病症患者提供支持，并帮助他们过上最好的生活。请观看我们的视频，了解我们为什么为患者尽心尽力。