A conference tradition! From PHA’s 2008 Conference, watch as Arlene Schiro, NP and Joesph Barnes share their journey with pulmonary hypertension.

PH patient Joe Barnes shares the story of his diagnosis and his life with pulmonary hypertension at PHA’s 8th International Conference in 2008

(In het Nederlands) Lut was a participant in the 5th European Conference on Rare Diseases (ECRD) Krakow, Poland 2010. Lut is a member of BOKS in Belgium

Ok, this is a little long, but please just bear with me. Thank you.
Ok, there is this one girl I know (who I sorta have a crush on) who’s name is Lexie. She is really the nicest girl I’ve ever met. She always helps me out when I am feeling down. Me and her are really good friends (JUST friends though, she doesn’t know I like her.)

………Problem: I have very bad health………….in fact, ever since febuary I have been sick every day……………. and the doctors found out why. I have a rare disease in which the organs slowly begin to lose their function (in a very painful way) until everntually they collapse and the victim dies. This overall process takes about a year. Meaning I have a equavilent of 6 months max. left to live……… unless the doctors are somehow wrong. (which is highly unlikely)

This came as a big shock to me when I found out in may (me and lexie are both 14 btw). Me being scared and stupid, I told Lexie about it. Obvoiusly, it scared her a lot. She then began to try to not talk as much (funny, how when you tell someone you have a limited time left, you think they’d try to spend more time with you, but they try to spend less time actually.)

Anyways, I later lied (i know…….. it was stupid of me to lie…….. but I was so scared…….) telling her, that the doctors were wrong, and that I never had it. She then began to talk to me more. She believes that I am still sick and the doctors are trying to figure it out more.

This disease contains the effect of nausea (about equavilent to the flu), up chucking, dizzyness, headaches, despair, etc. Obviously this has kept me from school.

Well, now, 9th grade has come, and I still have all those symptoms. But today was the first day of school, and I just tried to keep going, but I hardly made it through the day.

The problem is………….. I want to spend as much time with lexie before I go (obviously I don’t intend to make her my gf or anything, since that would hurt her a lot.) cause even if we weren’t super close friends she would still cry…..she’s sensitive like that.

The problem is………. I have a VERY sickly apperance going on. I am extremely pale, I shake uncontrollably at times, and I can hardly talk or else I almost always barf.

People understand that sick people like to be left alone………. meaning not very many people talk to me much. (even though I am a fairly well known kid)

How can I not let this handicap keep me from spending time with Lexie?
Thanks, and god bless.
1 day ago – 3 days left to answer.
Additional Details
P.S. Starring would be VERY appreciated.

Robert E. Patterson, Esq., Managing Director, Peninsula Ventures – Menlo Park, California

You can increase your energy by eating high potassium foods. Although not a stimulant or direct source of energy, potassium is essential, along with sodium, to regulate ATP (the source of energy for the chemical reactions in our body). Although it is classified as a mineral, the classification is to distinguish it from vitamins — as in vitamins and minerals. Potassium really is an element (remember the periodic table from high school?). When it is in solution in water, as it is in our body, it is an ion with a single positive charge. Because of this structure it is involved in a great many of the chemical reactions in our body.

One of the big functions it serves is to allow our cell membranes to work correctly. For the nerve cells throughout our body, the cell membranes are the working part. The cell membranes are what send the messages along the nerve cell. Potassium is key to how those membranes work. It allows the brain cells, other nerve cells and muscle cells to work correctly. By allowing those cells to function properly, potassium keeps the brain alert and the muscles relaxed. If our potassium is low we feel fatigued and have tense muscles.

There are a few diseases that are a contraindication to a high potassium diet. Addison’s disease, poor kidney function, hypertension if taking a potassium sparing diuretic, and a few other rare diseases require a low potassium diet, which should be overseen by a doctor. For everyone else a high potassium diet is highly desirable, and can improve energy levels in a few days.

Many healthy diets designed for other purposes, such as those for losing weight or lowering cholesterol will contain high potassium foods. Food with a high potassium level will be cholesterol lowering and weight normalizing, and have antioxidant and intestinal regulatory effects.

The categories of foods high in potassium are whole foods — vegetables, fruits, legumes, lean meats and fish, especially wild game. If the bran is missing from the grain, the food is one of the low potassium foods.

It is best not to boil high potassium foods because boiling draws potassium out of the food into the water. By making the boiled food a stew or soup that includes the water the food was cooked in, you can drink the water and not lose the potassium. Most other ways of preparing food will preserve the potassium.

Without too much difficulty you can begin substituting high potassium foods for the low potassium foods that have high sodium. In the short term you will begin to notice you have more energy. In the long term you will begin to notice you have more health.

Immune system diseases can be divided into two basic categories. There are dysfunctions or diseases of the immune system in which the body’s ability to fight disease is impaired and dysfunctions or diseases of the immune system in which the immune system overreacts to stimuli, causing damage to the other organs or systems of the body.

There are numerous rare congenital or inherited diseases of the immune system and these are frequently referred to as primary immune deficiency diseases. These immune system diseases affect an estimated 50,000 people in the United States. A healthy immune system recognizes “invaders” such as viruses, bacteria or anything that is not a normal part of the body and destroys these invaders. In cases of severe immune system diseases, the body may have little, if any, normal immune responses. These diseases of the immune system result in frequent recurring infections. Nezelof’s Syndrome, Granulomatous Disease, T-Lymphocyte Deficiency, Chronic Dysphagocytosis, Impotent Neutrophil Syndrome and Congenital Dysphagocytosis are all examples of immune system diseases in which there is a weakened or absent response to everyday bacteria, viruses, fungi, etc.

Acquired Immune Deficiency Syndrome (AIDS) is one of the immune system diseases that is not inherited or congenital. It is caused by an infection with the human immunodeficiency virus or HIV. HIV invades and inactivates certain cells of the immune system, known as helper T-cells. Helper T-cells are white blood cells that normally stimulate the production of antibodies and killer T-cells, which destroy viruses, bacteria and other invaders such as cancer cells. As opposed to the other rare diseases of the immune system, which may be caused by a missing or inactive spleen or thymus or some other congenital or inherited defect leading to a lack or absence of any white blood cells, a person who suffers from AIDS had a previously healthy immune system. According to the Center for Disease Control and Prevention (CDC), an estimated 944,305 people in the United States have been diagnosed with AIDS.

There are many conditions which are believed to be caused by dysfunction of the immune system and these are sometimes referred to as diseases of the immune system or are grouped together with diseases of the immune system for purposes of discussion. Rheumatoid arthritis, for example is believed to be caused by an “overactive” immune system. Diseases such as lupus, juvenile onset diabetes, multiple sclerosis, and psoriasis are all believed to be related to an overactive immune system. Diseases like these are characterized by immune system attacks on healthy normal cells for unknown reasons. Even allergies are believed to be related to dysfunction of the immune system, since the immune system overreacts to allergens.

Much about how the healthy immune system works is unknown. Most of what we know about a healthy immune system has been learned by studying diseases of the immune system. Much of what we know about health supplements that help support and maintain a healthy immune system arises from the study of immune system diseases and efforts to treat them. To learn about natural products that can boost your immune system, visit www.immune-system-booster-guide.com.

A pulmonary hypertension patient shares her experience at PHA’s 8th International Conference in 2008.

Being diagnosed with one of many very rare blood diseases can be scary and confusing. So much information is put into terms that is difficult to understand, which can leave you feeling lost and alone. But there are web sites that can help you to better understand your condition, and many that offer positive support through the process of treatment and recovery. One such site is mskcc dot org is one such site. Sloan-Kettering was developed to help cancer patients, but also offers valuable information for a variety of very rare blood diseases.

The site describes some rare forms of leukemias that many probably have never heard of. One such disease is Hairy Cell Leukemia, which attacks the cells that help create antibodies to fight infections. Signs of this disease include, abdominal pain, a low blood count, and the possibility of very rare infections, since the immune system is weakened so dramatically. Another rare form of blood cancer the site describes is Myleofibrosis, in which too much scar tissue is formed within the bone marrow. The presence of the tissue causes the red blood cells that pass through to be broken down.

In addition to these very rare blood diseases, information is also offered on eosinophilia, where a high number of eosinophils, which are a form of white blood cells, are present in the blood. Eosinophilia is not particularly a disease, but more a reaction to one. The body creates these extra cells to fight off an allergen, infection, or intrusive parasite, perhaps. When diagnosed with this condition, the underlying cause will be looked into next, to prevent a further complication from the actual disease that may not have shown signs yet.

Another one of the rare blood diseases that was described by Sloan-Kettering was paroxysmal nocturnal hemoglobinia. This disease starts with the mutation of stem cells in the bone marrow, which then causes red blood cells to break down as they pass through. In addition to this, platelets are not developed at a normal rate. This disease is treated in the same manner as aplastic anemia, but with a more aggressive approach. The disease can also be cured with a bone marrow transplant, which may be risky or appropriate, depending on the age and overall health of the patient.

Other very rare blood diseases include different types of hereditary anemias, idiopathic edema, congenital heart block, hereditary lymph edema, and vitamin B12 deficiency. These are just to name a few on the extensive list that is offered at bloodbook dot com. The site names a wide array of rare diseases and disorders that effect the blood, and gives a link to more information that is available on each disease. This site may be exceptionally helpful to any one who has been diagnosed and is looking for more clear information on a particular disease.