Locks of Love

I began growing my hair a little over a year ago. At first, I started growing it because I thought that I was going to have to have a bone marrow transplant. I have been receiving IVIg treatment for my cvid for 5 years now. Typically replacement immunogloblulin therapy is sufficient to keep a patient with cvid healthy. Unfortunately, this has not been true for me. When I was first diagnosed and started receiving IVIg treatment, I received infusions once every 4 weeks. At first this helped. I was in the hospital less than prior to being diagnosed and starting IVIg treatment; however, I was still getting many infections, frequently requiring the need to be hospitalized. My doctor determined that we would increase the frequency of the infusions to every 3 weeks instead of every 4. Initially this helped to decrease the occurrence of infections, but once again, it did not stop it completely. After nearly another year of treatment, it was decided that perhaps a lower dose more frequently would more effectively manage the infections. The new treatment schedule had me receiving 10G IVIg weekly instead of 40G every 3 weeks. The idea was that a lower dose more frequently would eliminate the peaks and troughs, helping me maintain a more steady state of immulglobulins, giving me better protection from disease and infections. This is not how cvid is traditionally managed, but we were willing to try just about anything to get the infections under control. Initially, things seemed to improve greatly. I was able to go 8 - 10 weeks without being in the hospital for an infection. However, this was still not enough to keep me infection free. Not having any other options, my doctor decided to suggest the possibility of a bone marrow transplant. A bone marrow transplant would be a cure for my cvid.

CVID is the result of faulty bone marrow, which makes faulty B cells. In healthy bone marrow, B cells are made and they mature to the point that they can identify, attack, and kill potential pathogens and invaders. In people with cvid, the B cells never mature. Instead, they remain in a naive (baby) state, where they are unable to identify or kill pathogens. Since most people with cvid are able to be kept healthy by receiving Igg infusions, a bone marrow transplant is not even considered. Though a cure, a bone marrow transplant is a very risky procedure. To undergo a bone marrow transplant, the patient must first go through high doses of chemotherapy and radiation to completely destroy the patient's own bone marrow. Once a patient's own bone marrow is completely destroyed, they receive an infusion of a donor bone marrow. The donor bone marrow must be a perfect match. Even under the best of circumstances, it is nearly impossible (except in the case of an identical twin) to get an exact match. The problem is that without an exact match, the body identifies the donor marrow as foreign and attacks it, causing a variety of symptoms called GVD (Graft vs. Host). A person's body can reject the donor marrow completely if it is too dissimilar. Once the person receives the infusion of donor marrow, the donor marrow grows and matures. Once it is fully mature and functional, the person can go home. The donor marrow is free of the genetic mutations causing cvid, and thus the person no longer is considered to have cvid. It is because of the severe risks and complications that a bone marrow transplant is rarely done. The chemotherapy and radiation itself is extremely harsh on the body and a person can die from complications of these medications alone. The chemotherapy causes the person to lose all of their hair.

When the doctors first began discussing this as an option for me, I began growing my hair. I knew that losing my hair would be very traumatic. I love my hair. In fact, it is one of the only physical features of my body that I absolutely love about myself and would never change. Why? Well, first of all, my hair is a unique color. It is made of various colors and tints - browns, blonds, reds... It can't be described as one color, but is often referred to as honey blond. I have never altered my hair color in any way. I am proud of my God-given color. In the summer, the sun causes it to lighten and different highlights of various colors appear. My mom's hair dresser has spent countless hours trying to reproduce the color of my hair for my mom when she gets her hair colored each month. I am proud of my hair and its uniqueness. It is a symbol of who I am. Losing it, even if it is to have a bone marrow transplant and a cure to my disease, would be devastating. This is why I began growing my hair as soon as doctors began even thinking of such an option. If I truly needed a bone marrow transplant, I wanted to be able to cut my hair and turn it into a wig to be worn while I received chemotherapy.

The Truth about Vitamins

When you have a chronic illness, some people who don't understand the illness offer suggestions of non-traditional or holistic ways of curing you. One big thing that people suggest is taking vitamins. I have been told been by some people that I don't need to take all the meds I do, but that I just need to take more vitamins. Take some vitamins and you'll be cured. People today often are part of a vitamin craze. They think vitamins will cure any ill they may have or could get. Some take more vitamins than I take pills. They have to get the super pill containers to hold them all. They take several handfuls of vitamins several times a day. In this, they believe more is better; however, more is not always better.  Taking too many vitamins can be harmful and even toxic to the body.

Vitamins are what is known as micronutrients. They are organic compounds that are required as nutrients in small amounts. They must be obtained by the diet and are not synthesized by the body. There are thirteen vitamins, which fall into one of two classes: water-soluble vitamins and fat-soluble vitamins. There are four fat-soluble vitamins (vitamin A, vitamin D, vitamin E, and vitamin K).

Water soluble vitamins, as the name suggests, dissolve easily in water and are excreted from the body as urine. There are nine water-soluble vitamins (the B vitamins and vitamin C). Fat-soluble vitamins are absorbed in the intestinal tract and stored in lipids (fat cells). Since they are stored in fat cells in the body, they are more likely to accumulate. Therefore, too much of fat-soluble vitamins can be toxic to the body and lead to hypervitaminosis. Hypervitaminosis is due to a vitamin overdose. This usually occurs by high supplement intake, not dietary sources.

Water-Soluble Vitamins:
Vitamin B1 (Thiamine)        

• Dosage:  1.2mg          
• Function:  coenzyme in metabolism of sugars and amino acids
• Natural Sources:  yeast, oatmeal, flax,  sunflower seeds, kale, brown rice, rye, asparagus, cauliflower, potatoes, oranges, pork, chicken, beef, liver
• Deficiency:  Beriberi, Wernicke-Korsakoff syndrome (occur in alcoholics)
• Over-dose: (5,000-10,000mg) headache, irritability, rapid pulse, weakness

Vitamin B2 (Riboflavin)

• Dosage:  1.3mg
• Function:  energy metabolism; metabolism of fats, keytones, carbohydrates, proteins; maintain mucous membrane, skin, cornea of eye, and nerve sheaths
• Natural Sources:  milk, cheese, leafy green vegetables, liver, kidney, legumes, tomatoes, yeast, mushrooms, almonds
• Deficiency:  skin disorders, light sensitivity, inflammation of soft tissue around nose and mouth

Vitamin B3 (Niacin)

• Dosage:  16.0mg
• Function:  precursor to NAD+/NADH and NADP+/NADPH (energy metabolism); DNA repair; production of steroid hormones in adrenal glands
• Natural Sources:  protein-rich foods (meat, fish, yeast, eggs, milk, legumes, potatoes, peanuts)
• Deficiency:  Pellagra
• Over-dose:  (35mg) liver damage, flushing, tingling, itching, headache, nausea, diarrhea, ulcers

Vitamin B5 (Pantothenic Acid)

• Dosage: 5.0mg
• Function:  synthesize co-enzyme A; synthesize and metabolize protein, carbohydrates, and fats
• Natural Sources: (in nearly all foods) whole-grain cereals, legumes, eggs, meat, royal jelly, avacado, yogurt
• Deficiency:  parenthesia, hypoglycemia
• Over-dose: (extremely rare 10g/day) diarrhea, nausea, heartburn

Vitamin B6 (Pyrodoxine)

• Dosage:  1.3 - 1.7mg
• Function:  sodium/potassium regulation; red blood cell production; cofactor in neurotransmitter production (serotonin, dopamine, epinephrine, norepinephrine
• Natural Sources:  liver, meat, brown rice, fish, butter, wheat germ, whole-grain cereals, soybeans
• Deficiency:  (rare - due to alcoholism) anemia, peripheral neuropathy
• Over-dose:  (100mg) impairment of proprioception, permenent nerve damage, impaired walking, numbness, tingling, poor sense of touch

Vitamin B7 (Biotin)

• Dosage:  30.0 micrograms
• Function:  metabolism of fatty acids; role in gluconeogenesis
• Natural Sources:  egg yolk (without egg white), liver, vegetables, peanuts
• Deficiency:  alopecia, conjunctivits, dermatitis

Vitamin B9 (Follic Acid)

• Dosage:  400 micrograms
• Function:  synthesize, repair, and methylate DNA; aid in cell division and growth; necessary
• Natural Sources:  leafy vegetables, legumes, eggs yolk, yeast, whole-grain cereals, sunflower seeds, liver, kidney
• Deficiency:  anemia, poor growth, neural tube defects in developing fetus in pregnancy, peripheral neuropathy, mental confusion, heart palpitations, irritability, behavior disorders
• Over-dose:  (1,000 micrograms) mask symptoms of vitamin B12 deficiency

Vitamin B12

• Dosage:  2.4 micrograms
•  Function:  regulation and synthesis of DNA; fatty acid synthesis; energy production; formation of blood; normal function of brain and nervous system
• Natural Sources:  animal sources (fish, shellfish, meat, eggs, poultry, milk
• Deficiency:  pernicious anemia

Vitamin C (Ascorbic Acid)

• Dosage:  90.0mg
• Function:  antioxidant; formation of collagen; improve iron absorption and resistance to infection
• Natural Sources:  vegetables (broccoli, green and red peppers, collard greens, brussel sprouts, cauliflower; fruits (lemon, pineapple, strawberries, citrus fruits)
• Deficiency: scurvy

Fat-Soluble Vitamins
Vitamin A (Retinol, Beta carotine)

• Dosage:  900 micrograms
• Function:  vision; normal skin
• Natural Sources:  liver, carrots, broccoli, sweet potatoes, butter, kale, spinach, pumpkin, collad greens, milk, cheese, peas, eggs, apricots, mango, papaya
• Deficiency:  impaired vision, blindness, impaired immune function, hyperkarotosis
• Over-dose:  (3,000 micrograms) nausea, irritability, vomitiing, diarrhea, blurred vision, headache, insomnia, hair loss, muscle and abdominal pain, bone fractures, loss of appetite

Vitamin D

• Dosage:  5.0 - 10.0 micrograms (requires sunlight to be effective)
• Function:  aid in immune function; regulate calcium concentration in blood; mineralization, remodeling, growth of bone; regulate proliferation, differentiation, apoptosis of cells; regulate neuromuscular function; reduce inflammation
• Natural Sources:  fatty fish, eggs, meat
• Deficiency:  rickets, osteomalacia

Vitamin E

• Dosage:  15mg
• Function:  protect red blood cells; prevent destruction of vitamin A and C; protect skin; heal scars
• Natural Sources:  seeds, nuts, green leafy vegetables, tomatoes, pumpkin, sweet potatoes, mango, asparagus, broccoli, papaya, olives, avocado
• Deficiency: (rare) hemolytic anemia in infants, myopathy, peripheral neuropathy, impaired immune response
• Over-dose:  (1,000mg) increase risk of congestive heart failure

Vitamin K

• Dosage:  120 micrograms
• Function:  protein synthesis; blood coagulation;
• Natural Sources:  green leafy vegetables (spinach, swiss chard, broccoli, kale, cauliflower, cabbage, brussel sprouts, avocado, kiwi
• Deficiency:  (rare) bleeding diathesis, bleeding, anemia, bruising, osteoporosis, coronary artery disease
• Over-dose:  increase coagulation, allergic reaction, hemolytic anemia, cytotoxicity in liver cells

As you can see, vitamins are important to the health and normal function of the body. Most vitamins can be obtained from natural food sources; however, in cases in which deficiencies occur, vitamin supplements are needed. People often take vitamin supplements thinking that the more they take, the healthier they will be. This is not true. There is only so much the body is capable of absorbing and using. If too much of a water-soluble vitamin is ingested, it will be excreted as urine. This has minor effects on the body and basically a person is just paying for very expensive urine, as the cost of some vitamins is quite substantial. If too much of a fat-soluble vitamin is ingested, it will be stored in the fat and can become toxic. Like any medication, vitamin supplements also have side effects. Taking vitamin supplements such as a daily multivitamin can help improve your health, however, it is important to remember that too much of anything can be harmful.